This blog is about macrodactyly, a rare condition affecting the feet and the hands.

It is still under costruction, but if you know information that could be helpful, please, contact us:


Thanks a lot!

Words in italics are explained in the K.I.S.S. Section (still under construction and continuosly being updated)

A few hints about the condition

Macro means larger than what is considered normal; pedal macrodactyly is a condition where the toe on a foot is growing more quickly than the other normally growing toes. It is a rare congenital disease, which means that you are born with it, although it doesn’t seem to run in families. Because the toe is larger than the others, it has extra fibrous fatty tissue on the bottom (the plantar part of the toe, causing it to curl upwards, the dorsal or top.)

Macrodactyly falls into one of two types: static or progressive, the most common type. Patients with static macrodactyly have larger toes (or toe) when they are born. It then continues to grow proportionally to the other toes. The other type, progressive, the toe grows faster than it should, given the growth pattern of the child. The condition can occur on one foot only, on both feet, and it can be symmetrical or asymmetrical. Macrodacytly isn’t necessarily associated with any other type of deformity, although it can be found in people with some types of syndromes, such as Proteus syndrome, Banayan-Riley-Ruvalcabe, Maffuccin, Ollier’s disease, and Milroy’s disease.

True macrodactyly must be distinguished from other forms of enlarged digits that are a result of tumours, inflammation and other specific tissue dysplasias such as hemangiomas, arterovenous shunts, congenital lymphedema, lipomas etc.
The confirmation of macrodactyly, obviously, is made radiographically.

Although the cause of macrocactyly isn’t known, there are theories, which include one hypothesis of a defect in a cell that causes certain areas of the body to become supersensitive to growth. Another theory is that it may be caused by an interaction of genetic and environmental factors. There may be hemangiomas, which are benign (noncancerous) tumors made of a mass of blood vessels. These may also cause enlargement of the toes. Another cause could be damage in the nerves, causing rapid overgrowth of the area.

When the affected toes of children are examined, it is seen that the subcutaneous fat, the fat just below the skin, looks like adult fat, not a child’s. As well, all the elements of the toe are larger (the tendons, nerves, blood vessels, fat, nails, skin and the bones in the toe. The skin on the affected toe is thicker than normal and the toe feels rubbery and soft.

Treatment for the disorder depends on several issues, particularly, if the toe or toes are causing pain or disability.


139 Comments (+add yours?)

  1. Loan Nguyen
    Jun 02, 2011 @ 09:45:36

    My daughter is 13 months old. She has a macrodactyly toe on left. I live in Vietnam. It seems that this is a very rare in Vietnam because doctors that had examined my daughter’s toe has never treated this case in Vietnam. A senior doctor advised that my daughter should have a surgery to cut short macrodactyly toe and remove hypertrophy of adipose tissue from this month of age. Besides, the doctor will cut off a blood vessel that feeds macrodactyly toes to prevent further overgrowth of it.
    I’m very sad and worried, I don’t know what I should do.
    I wondered, why my baby is macrodactyly on her toe. If I had the second baby whether she (he) was macrodactyly or not.
    I’m always thinking about the cause of macrodactyly for my child as follows:
    I had some chemical contamination in the laboratory of the school when I was 17 years old.
    I have used herbs to make my menstrual cycle better.
    I ate food that is infected stimulated growth drug on during pregnancy.
    I hope you will share your experience to me.
    Loan Nguyen.


    • macrodactyly
      Jun 02, 2011 @ 12:10:16

      dear Loan,
      I feel very near to you in this moment. It is always very difficult to make decisions when the health and wellbeing of our little ones is at stake. We haven’t decided what to do yet, but I give you only one suggestion: see as many doctors as you can. As parents we should aim at finding a doctor we completely trust and who takes the situation of our children to heart. Otherwise it would be impossible to feel relaxed and peaceful with our choice. Every doctor has his/her own view. According to some surgery should be done as soon as possible, according to others it should be delayed as much as possible. As you can see these two views are diametrically opposed. I must confess that we are much more in line with the latter. We fear so much surgery and most of all we fear to “medicalise” our daughter’s condition. She is now the most light-hearted and lively little person I have ever known. Surgery is trying both physically and psychologically and results are often disappointing, especially if the aim is to achieve a satisfying aesthetic result. Most probably we are going to follow a functional approach and to delay surgery until the onset of serious problems with walking and shoe-fitting.
      However, everything depends on how much your daughter’s life is affected by the condition. Were you able to determine whether the condition is static or progressive in your case?
      One more thing: the condition is of course rare, but there are for sure other parents in Vietnam who are experiencing the same situation. I hope this blog can help you find them.
      Good luck for the moment! I hope you’ll continue to write and keep me updated on your child’s improvement.


    • macrodactyly
      Jun 02, 2011 @ 12:16:06

      Sorry, I forgot one last thing: please, do not feel guilty for your child’s condition. It is nonsense now to question why all this happened. We should now focus on doing our best to ensure that our children live as much as possible a happy and untroubled life.


    • norma
      Sep 16, 2014 @ 15:54:07

      hi I have 3 sons my middle son had this on his foot started when he was 5 months old . and has never stopped growing he is 31 now . and has still major problems with his toes and under his foot . shoes are a night mare always have benn boots are the thing he wares shoes don’t stay on his foot. he has 2 little girls now . has had one toe removed and wont take his girls swimming incase someone looks at his foot. cant find an expert in the uk just a plastic surgen who just cuts his toe off


  2. Emily
    Jun 02, 2011 @ 22:20:44

    Hi! My name is Emily and I am a 20yr old with Macrodactyly in my left foot. I haven’t had much time to read through all the posts, but I still felt as though I should share a little bit. I have the condition in mostly in my left foot although my entire left leg is visibly different from my right.

    At six months old, I had the two largest toes on my left foot amputated in order to make my foot more functional once I started walking. At five, I had a debulking surgery and at twelve, I had another surgery where they removed my growth plates, shaved down bones, and removed more soft tissue. While I look different, I have a fully functional foot. Although I can’t wear high heels or Converse, I do get to wear sheep skin slippers made specially for me.

    In all honesty, I’m mad and I always have been but there isn’t anyone to blame and I have never blamed my parents or any other family members because I understand this is a completely random condition. I do experience some pain and discomfort in my joints because of the excess tissue but at the end of the day, I’m healthy and happy.

    I can’t imagine how parents feel about watching their children experience this, no matter how old they are. I would love to talk to you or any followers, or even your kids assuming they’re old enough because I think we can all relate. Hope all is well.


    • Mona Elise Olsen
      Sep 03, 2014 @ 16:45:30

      Hei Emily! Nå er jeg på nett for å finne en god kirurg til min sønn på 34 år. Han har macrodactyly på sin høyre fot, tå nr,2 og 3. Han har blitt operert 4 ganger,men sliter med smerter og er sint,sånn som du beskriver. Vil så gjerne hjelpe han. Hvordan er det med deg i dag? Har du lyst å fortelle? Ditt innlegg er jo fra 2011 🙂 Med vennlig hilsen Mona Elise,the mother of Raymond. monaeliseolsen@gmail.com


    • Elizabeth M Broughton
      Dec 30, 2016 @ 14:21:15

      Hello Emily,
      Thank you for sharing your story. It is nice to have someone older than my son with this condition to know what lies ahead of us. My son is now 15 and at 1 he had his 2nd and 3rd toes amputated with ray resection. Although the bulking has come back and the disease in in his 4th toe that has grown a little, he continues to be an active teenager that plays football among other sports. we have left further decisions to be made by him, and at this point he has decided not to do any further surgeries. At least for now, he wants to continue to do the things in high school and not be limited if he had more surgeries. We shall see what the future holds, but I do appreciate knowledge of your story to help guide him in his future decision making.
      Thank you again
      Liz Broughton


  3. Loan Nguyen
    Jun 07, 2011 @ 07:15:58

    Dear Macrodactyly and Emily,
    Thanks so much for sharing your experience of macrodactyly with me. I’m very grateful to you for your encouragement and solace to me.
    I intend to have my daughter’s toe made orthopedic surgery when she will be 3 years old.
    I will usually write about my child’s situation on this blog.
    Best wishes to you.


  4. Jen
    Jun 16, 2011 @ 01:05:15

    Hi All,
    I am 36 and have macrodctyly of the right foot. Back when I was a child they tried a few surgeries but my toes continued to grow. They also webbed my toes together as they weren’t sure what to do. When I was 15 I had a ray resection and some debulking done of the adipose tissue on the ball of my foot. It has now been 21 years since surgery and for the most part things have gone well. I have had a few episodes of phantom pain that have driven me nearly insane! I have developed osteoarthritis in the joints that were operated on and I have recently developed some newer problems but overall I have been able to wear most kinds of shoes and be very active and live a very normal life. All the best to you all as you go on this journey, Jen


  5. Bri
    Oct 03, 2011 @ 18:59:58

    Hey all. It has taken me 21 years to gather enough courage to research and write this. I have 2 brothers and a sister and as a kid my envy toward them as a kid was intense. I always asked myself why had it not happened to them it’s just so unfair. I blamed my mother all the time and it kills me that I would put that on her. I’ve had about 6 surgeries for de-bulking, shortening of the bone in my big toe, amputations, and half of my toe nail removed in my big toe because I had severe in-grown toe nails. It is effected in my right foot i have a normal foot on one half and my first toe is larger than my left big toe and I had the 2nd and 3rd toes amputated at a young age so it would not spread. It didn’t spread and I’m so thankful for that. Although the bulk is still there I’m blessed. It kills me to see flip flops, cute peep toe shoes, and those who swim so freely and myself standing off to the side wearing one sock in the pool and blaming it on “past surgeries to correct a broken bone when I was three.” I am proud to have played varsity sports such as soccer, basketball, softball, and for a short while lacrosse. I even did Irish step and a very short lived year of ballet. My balance wasn’t as great during basketball but I was tall and ran like nothing abnormal was in my sneakers. I even worked as a floor model for Abercrombie and Fitch, (I wore converse sneakers that were allowed for the dress code! lucky me!) Sure, shoe shopping sucks but I manage to find cute shoes eventually, winter is great boots and no one can wear flip flops. I’ve ALWAYS asked for cosmetic surgeries for two fake toes maybe lipo-suction for the fat maybe shaping for the big toe to make it look normal, but I’m not positive that’s even possible. What I’m trying to stress is that yes, it’s bad and so unfair. However it’s not on my face nor my hands or the rest of my body. I’m a tall, beautiful, athletic, strong willed woman. Some people don’t even have that! Shoes and socks can hide this and everyone who makes fun of it can shove it, I’ve had many people I thought I could trust know about my most sacred secret. And best believe when parting ways or getting in fights i was called “sasquatch” “the six toed girl (they’ve cut me short I HAVE 8!)”, alien or “retarded” foot, and lastly the “freak foot” These people have never called me fat or ugly, which always means that I am not any of those so they must dig for horrible insults to bring me down and guess what? I’m still alive, intelligent, athletic, and a damn good friend to have. Psychologically, this has effected me emotionally all my life even times to this very day. For anyone out there reading this feel blessed that God put you on this earth to bear what others could not handle as well as we all have.


    • Karyn
      Oct 08, 2011 @ 22:55:50

      Hi, I have macrodactyly of the hand which effects my middle finger and know exactly how you feel. It’s something I don’t thnk I will ever come to terms with and will do anything to keep it a secret. As a child I never got any treatment I remember regularly going to the hospital but nothing was ever done. I am struggling day to day as now its quite painful and am finding it really hard to fully bend my finger so making it more difficult to hide. I can’t even bring myself to go to the doctor as I am to ashamed. Yeh I am gratefull to be otherwise healthy, have a wonderful family and a really good life but like you and your flip flops I would love to get my nails done and not feel I want to curl up and die when someone wants to shake hands. But hey theres plenty people in a worse position and one day maybe I will accept me for who I am or find the courage to seek medical help, who knows there maybe be someone out there who could give me a lovelly new finger ( I can live in hope ). Your post really helped me never had the chance to speak to anyone who would really understand what it feel like. Thank You for giving me this oppertunity.


      • Sam
        Oct 23, 2011 @ 23:42:15

        Hi Karyn,
        My 6yr old son has macrodactyly which affects 6 of his fingers (the middle finger of his right hand is severely affected) as well as the back of his hands. We live in the Caribbean and are currently raising funds for his surgery. His surgery will be performed at Badia Hand to Shoulder Centre in Doral Miami, Florida. Please check them out, the staff are all very helpful and sweet. I am certain that they can help you.

      • Brittanaca
        Dec 22, 2011 @ 17:35:06

        Hello Karyn,

        I do not have macrodactyly, but I am a mother of a 4 year old girl who has it on her left foot and it affects her big toe and bottom of her foot. I just want to say to you do not be ashamed at all, especially about going to the doctor about it, because they are here to help. We live in Texas and after going from doctor to doctor, my husband and I have found a doctor in Dallas who will be performing my daughter’s first surgery next month. The doctor made us feel so welcomed, he had a smile on his face the entire time, and he made my daughter feel like there was nothing wrong with her foot at all, He told her that he was just here to make it even more perfect. That touched my heart and made me sooo happy for her. I am excited about her surgery because as of now, she is not able to wear a shoe, and I am excited about the doctor we found! I encourage you to go to the doctor and look for a doctor who is familiar with the disorder. Believe me, you have nothing to be ashamed of because doctors have seen it all : ) You stay encouraged and hopeful. I will keep you in my prayers and pray that you do find a doctor that can help. Take care!

      • Mike
        Aug 15, 2012 @ 16:58:57


        I totally understand your situation. I have MD on my left hand. My ring finger was removed as an infant and I went through about a half dozen debulking surgeries as a child. Growing up with MD was difficult, but you have to remember that adults are generally accepting and understanding. You and I may still have axiety because of the way kids would react to our MD when we were young, but I have found that when most people notice my MD they are just geniunely curious. It can be annoying to have to explain your MD, but try not to associate it with your negitive experiences from your youth.

        As far as seeking medical treatment you should not be ashamed of anything because you have done nothing wrong. I remember my hand surgen’s office from when I was probably 5 years old. He had hundreds of plaster molds from the children’s hands he had worked on. I remember feeling like I was in a judge free safe zone as soon as I walked through those doors. That feeling made the entire process very tolerable and it kept my axiety low.

        Doctors that perform MD procedures are not your typical “plastic surgen”. They are highly skilled at what they do because of the complexity of the procedures they perform, and likewise they are very understanding to your needs and emotions.

      • Bri
        Aug 17, 2013 @ 03:50:12

        Sorry it’s taken me a bit to reply. I’m now 23 and nothing’s changed with me as well. Your posts like all the others brought tears to my eyes. I’m most positive you are a beautiful young woman and it’s so tough I understand your pain and insecurity. I wish the world were not so judgmental and we could walk into a nail salon to get manis & pedis =) I was at a bar this summer and some girls from high school that I had gotten into a fight with (how immature) back then one of them I’d known since childhood told one of them.. A guy I knew walked up to me and said hey I heard you have 9 toes.. Now let me tell you my face drained of color, I didn’t know if I should be angry, mortified, embarrassed, ashamed, or just want to curl up and die. At 23 this happened, because people are mean and as I’ve said they couldn’t call me ugly or fat because I’m not so they go for the thing you cannot control because they’re jealous and have nothing else. Parents, don’t be afraid, yes your child will bare more than other children but they’re healthy, beautiful, and alive. They’ll be devastated, angry, and want to cry and let them it’s natural I did it and still do. But, it’s not your fault and it isn’t theirs. I played sports, had tons of friends, did Irish step, went to proms, went to parties, I’m a normal person minus my small minor foot which I can hide but sometimes I’d love to lay on the beach with my friends who don’t know about my foot many don’t because of girls I thought were friends so trust is an issue. I’d love to wear sandals and peep toes and feel normal. But I can’t and I must continue and you’ll all find this and eventually it won’t seem so bad. Embrace your children they’ll need you my mother was my rock at every surgery ill be having another this year.

        Good luck & stay positive

      • Okema Shields
        Dec 10, 2014 @ 23:25:37

        I also have macrodactyly of my left hand. When I was younger I had one of my fingers amputated, however I still have one remaining. The side of my palm with the finger is severely bulky and I have been working and driving as normal. I am now starting to feel more pain and see more swelling. I’ve seen doctors recently but to be honest I have found them no help as they are nothing like my original doctor at the children’s hospital. I am now looking to venture to America with hopes of finding a specialist who will be able to give me some good news, as I am running short on hope here in the UK.

      • shannon
        Dec 31, 2014 @ 00:08:37

        Hi. I have macrodactyly in my left hand, family guy and have never talked with anyone with the disorder. Are there any forums out there to speak with others that have macrodactyly?

    • chezera
      May 02, 2014 @ 08:01:57

      That alright bri.sounds like the spirit of champions.I was bullied for other reasons growing up…sounds like u are someone id be proud to know……


    • chezera
      May 02, 2014 @ 08:22:09

      You sound like someone I wanna meet.u are awesome.my.name is chezera


    • Elena
      Mar 13, 2017 @ 21:45:24

      I think around the age of 10 a doctor said it was just a toe and if I did want to do any kind of surgery I’d need to wait until the bone stops growing and that based off the X-Ray, it’s filled with blood vessels so surgery would be unlikely. I believed him, and behaved very much like you when it came to “hiding” it. I behaved very different after that, self conscious couldn’t cut it as a word that described how I felt. I am not 100% sure if this is the name of what I have but I do know it’s a congenital defect but it sounds identical to what this is. All these years later I wish I could find that doctor to give him a piece of my mind. Especially when I learned that my toe was not filled with blood vessels -_- But praise God after about 17 years I am having my first surgery on Wednesday. I am hoping that will be the only surgery I need. God bless all of you!


      • Danielle
        Mar 16, 2017 @ 17:37:14

        Good luck with your surgery Elena. Prayers that all goes well. I know everyone would love to hear how it goes!

  6. Becca
    Nov 29, 2011 @ 13:39:22


    I am a mother of a little boy who is now 3 years old. We are from the UK, Scotland to be more specific and the consultant we see at the children’s hospital has only treated one other case of macrodactyly in his time.

    My son had the second toe removed from his left foot a month after his first birthday. This was the main toe affected however since then his first toe has been badly affected. It has grown 2 sizes larger than his other foot which doesn’t have the problem. He gets custom made shoes at the moment so it’s an appointment every 6 weeks for that and he see’s the surgeon every 6 months. They are reluctant to do anything at the moment and would rather wait until he’s a little older. At the last appointment they were talking about shortening and debulking but nothing is set in stone at the moment.

    I hope that there won’t be many more surgeries as it was a traumatic event the first time. I am just glad that this is the only thing that seems to be wrong with him and the original problems they suspected at birth and a few months old they turned out to be nothing.

    It’s great to hear from other people going through the same thing, it’s a lonely time knowing your child has this condition and there is no-one to talk to about the fears or the what if’s.


  7. Cecily Van LIew
    Dec 12, 2011 @ 04:37:10

    My son was born wiuth macrodactyly in his left foot. His middle toe was affected and at 10 months old the first doctor amputated his toe down to the first digit in order for him to wear shoes. It continued to bother him and we were referred to Shriners Hospital and at 3 years old he had his entire middle meditarsil amputated and a debulking procedure done on the fatty tissue on the underside of his foot. He is now 16 and has competed in many athletic events and it hasn’t bothered him unless he runs for great distances. He is embarrassed by his unusual foot. I do recommend Shriners to anyone with this problem. Shriners was wonderful and has been very helpful. Shriners is also free of cost.


  8. Brittanaca
    Dec 22, 2011 @ 18:14:22

    Hello Everyone!

    My daughter is 4 years old and she has macrodactyly in her left foot. It affects her big toe (which is bigger than mine) and the bottom of her foot. I noticed the difference in her toe soon after she was born, and the doctors said she will grow into it. Well, after she started growing, her toe was growing and getting bigger. I knew there was something wrong, especially when it would turn purple and swell. By the time she was 3, she was not able to wear a shoe and now her foot is starting to lean inward. Over the years, we saw different doctors who took several x-rays, but they did not do anything else after that. Thankfully, we found a pediatric plastic surgeon at the Children’s Medical Center in Dallas who is very familiar with the disorder and has scheduled her first surgery in January. He plans to do a series of debulking and does not want to amputate, because thankfully, only one digit is affected. My only concern is that once the tissue is removed, is it possible for it to spread to her other toes? He says that of course, he can’t make it look exactly like the other foot, but he will definitely make sure she can wear shoes. I am looking foward to that, and years of her being able to run without tripping and play sports. She wants to do ballet, so I truly believe her doctor will help her to accomplish that. I was told that macrodactyly is very rare, but the more I research, the more I find that there are a lot of other families who are dealing with this disorder. All of your stories have helped me, and to you older people who have been living with the disorder for years, you have made me feel good in knowing that my daughter will be okay as she grows older and she can make it though this. Thank you all and stay encouraged! God bless : )


    • Sarah
      Mar 14, 2015 @ 15:43:47

      Hi brittanaca, can you give me the name of the dr who performed the surgery? How is your daughter now?


  9. Sam
    Mar 08, 2012 @ 01:09:29

    Hi Everyone, my son is now 7yrs old. He had his first surgery done on his middle finger, right hand. It was done at the centre I mentioned previously. It was very successful, they debulked on one side and shortened the digit. He is doing really well. All the medical staff treated him with such love and made sure that he was calm. We are to return soon for further debulking. May we all be blessed with strength and health. Take care y’all!!


  10. Emily
    Mar 09, 2012 @ 00:02:13

    Hey guys, Emily here again! I really enjoy reading all of the posts and seeing the people effected as well as parents of children talking about this. I’m 21 now, and nothing has changed. I guess I’ve come to a point where based on limited blood flow, surgeries have become more dangerous so I can either risk that or amputate which seems completely pointless seeing as while it’s enlarged and looks freaky to some people, my foot is completely functional.

    I would also like to ask, has anyone else noticed the amount of posts on here of people or children who have to defect in their left foots? Mine affects my left leg and mainly my foot. I visit the doctor maybe once a year at this point but maybe this is something someone could ask their current doctor and report back? Just wondering. Hope everyone is doing great!


    • macrodactyly
      Mar 09, 2012 @ 17:55:26

      dear Emily, when we visit our doctor in September I will surely ask. Anyway, my daughter has her right foot affected. I don’t know if there are any statistics about frequency of affected side of the body. Maybe it’s just a chance that the story you heard about all concern the left side.


  11. Emily
    Mar 10, 2012 @ 02:07:14

    A lot of the cases I’ve heard of/seen involve the left side and I was just interested to know if that’s just a coincidence or not. Please keep me posted thanks!


  12. Alana Campana
    Mar 12, 2012 @ 16:09:48

    Hi – so glad to have found this site. My daughter who is now 11 has macrodactyly of her right foot – her fourth and fifth toes and the bottom of her foot. She underwent 2 debulking surgeries when she was 3 and 4 which may have slowed the growth somewhat. That surgery was done by a plastic surgeon who referred us to a wonderful podiatrist because he felt there was nothing further he could do for her other than amputation. The podiatrist does have some experience with macrodactyly. He has us on a course of just watching her growth for now and when her foot stops growing, perform a debulking surgery and possibly shortening of the toes. This condition has not caused her any pain in her daily life and has not stopped her from running, playing sports and gymnastics. It does present a problem in buying shoes – we usually have to buy two different sizes. Thank God for Crocs – she lived in them for a few years. She is a very active, outgoing beautiful girl, although she is very sensitive about her condition and would like to be like her friends and wear sandals and cute shoes without being embarrassed about her foot. I pray every day that her condition can be treated with a postivie outcome.


  13. Noelle
    Apr 29, 2012 @ 00:32:28

    Hi all, my name is Noelle and I have a 9 month old daughter who has macrodactyly affecting her first 3 toes of her left foot. We have our first consult with an orthopedic surgeon next week. It saddens me to read some of these stories of young girls/women who have gone through ridicule and feeling of low self confidence. This is my biggest struggle, knowing that my daughter, too, will deal with these very same issues. It is going to be my biggest role life to help this little girl be the most self confident, free willed person she can be. I don’t know what steps we will be taking yet but I do know they will be sooner than later. Her two middle toes are so progressed and seem to be still progressing at a faster rate than the rest of her little body. They also have sydactyly (connected) and are pointing straight up. Her pad also fills the palm of my hand, there is no fitting any type of shoe on there. She doesn’t seem to like to bare weight on it either.
    Hoping for some good options at her appointment, and to have Dr. With prior macrodactyly experience!


    • macrodactyly
      Apr 29, 2012 @ 18:00:07

      dear Noelle,
      thanks a lot for sharing your story.
      Do not feel discouraged!
      I would like to tell you one thing. I am adopting another child from China from the waiting children programme and in the last few weeks I have been searching the web concerning various conditions that may affect our child in order to say “yes”, “no” or “perhaps” for being referred with a child with such “special needs”. I let you imagine how many such children have conditions whose very name is able to frighten prospective parents.
      At least our little ones do not have a life-threatening disease. I know it’s not easy to deal with macrodactyly (otherwise I wouldn’t have opened this blog), especially with its psychological effects, but at least we can affirm that our children, are apart from this, completely healthy.
      Keep us posted on the outcome of your appointment.


  14. Priscilla
    May 12, 2012 @ 22:08:02

    Hello Everyone,

    I enjoyed reading all of your different cases. Some more severe than other’s but one thing we all have in common is the love we have for our children. My son was also born with Macrodactyly on his left foot. His right foot was also affected but not as much as his left. On his left foot he has no toe nails and the 3 middle toes are short, webbeb, fused and deformed. The human body is born with 2 bones in all toes, My son was born with one bone in all toes. I also found it strange that not only is this condition rare but I have noticed that is has been most effected on the left side. My son is now 3 years old and for the past 2 years I have been doing non stop research, speaking to many doctors here in my city (Santa Clara, CA) and also to other doctors throughout California. I also currently gathered more information that I would love to share with you all. I have built my own website with current information from specialist from all around the world (including location and reviews), information i gathered on the condition and pictures and stories from other parents who also have children suffering from this condition. You will also have the option to share your story with pictures as well. The information I have gathered is for minor and sever conditions. I will also be sharing my own personal experience, or more like adventure I have had with my little boy. I can honestly say I understand where each and every one of you are coming from. We are not ashamed of our children’s condition but afraid to embrace it. I have spent a lot of time on the research I have gathered because I, at one point was as confused as most of you, I still am but as the days go by i learn more and more everyday and I am extremely excited to share it all with each and every one of you. I hope the outcome from it is to help each other with information and for support.
    As soon as my website is all set I will be posting the name of my domain on here and on other blogs as well, I look forward to sharing this with you all.

    In our eyes our children are perfect and that is one thing we must show our children to see as they grow.
    -Priscilla J. Marquez

    (you’re welcome to email me regards to the approximated date priscillajmarquez@yahoo.com)


  15. Amber
    Sep 24, 2012 @ 16:21:07

    Hi Everyone,
    My name is Amber and I was born with static Macrodactyly, to my left middle finger, almost 50 years ago. When I was born with this, the doctors at the hospital had to go to the medical library to find out what it actually was that I had. The first thing done was all the veins were stripped to try to stop the growth, but that did not work so at 6 months old they decided to amputate my middle finger. The disease had also left my left ring finger longer, a littler larger(not too much) and bent on the end. At 12 years old I would have my 2nd or 3rd surgery (can’t remember) to remove scar tissue built up in the palm of my hand and have my ring finger broken and set with pins to try and straighten it. The surgery worked, but now my ring finger was extremely long, so at 19 years of age I had another surgery to remove my upper joint and calcium shaved from the pointer and ring fingers. During this surgery I almost lost both fingers so I was advised by the surgeon never to have the hand operated on again. Agin the surgery worked. My finger is shorter but at my age calcium is now building up on both the ring and pointer finger joints.

    I consider myself blessed due to the fact that my parents never let this be an obstacle for me. I went through 16 years of school and not one person ever made a rude comment about my hand. I was a cheerleader in school, on many social committees, Secretary of my Senior Class, Homecoming Court and a sorority member in college, so my “little” flaw did not hold me back. I even became very good in math. If you embrace it from the beginning it is much easier. I always tell everyone that God only cracks a few perfect eggs and I consider myself one of them!!!! By the way, I wear my wedding ring on my right hand and my husband of 21 years and my two boys, ages 12 and 19, are more than happy to hold my LEFT hand!!!

    Thanks for letting me share.


    • Linda
      Mar 04, 2017 @ 18:50:21

      Amber, thank you for sharing your story. I am also an older person who has dealt with this problem. I am 65 years old and was born with “gigantism” (as it was called when I was born) in my lateral right lower leg and the mid foot. I have had five surgeries, mainly amputations, of toes and metatarsals to make my foot small enough to fit in the same size shoe as my “good” foot. Three of the surgeries were when I was an infant, then one at age 16 and the last when I was about 50. While I will admit that shoe shopping is not fun and age has made my foot and ankle more uncomfortable at the end of the day, my foot problems have also enhanced my life. I had so much exposure to the medical community when I was young that I chose a medical career. It is from the heart that I am able to tell people that none of us are perfect. I also am known for dressing professionally with very sensible shoes; I’ve been told by a few young women that they decided if I could be a professional with such practical footwear that they could do the same instead of wearing heels. There is no reason to be ashamed of being different. Being different does not define us. I am thankful for my orthopedic doctor who told me how lucky I was every time I visited him because I was able to walk. And when people ask me about my large foot, I share my story, show them my foot, and tell them what a lucky person I am because I can walk. My foot issues were hard on my mother and father and I will admit I worried a lot about my pregnancies, but my kids were not born with macrodactyly. They just have other little quirks like we all have and learn to live with. Like I said, no one is perfect, and we are all lucky in other aspects of our lives.


      • Mike
        May 03, 2017 @ 15:55:42

        Thanks for sharing Linda your adventure. My background is very similar to yours; I have several surgeries when I was an infant, however, at the age of 17 I have moved to NYC and no longer able to visit my doctor back home. I think my situation is not as severe as others but still my one and only macrodactyly toe on my left foot is slowly affecting my career. Recently I have started to search reconstructive surgeons around my area to help fix this problem but have not yet found one. May I ask for any recommendations? Thank you again for your inspiration.

  16. Liz Broughton
    Sep 26, 2012 @ 16:50:00

    My son was born with macro in his right foot 2nd and 3rd digits. They were also fused together. We went to more doctors than I could count to figure out what is was. We finally saw a podiatrist who told us he had only seen this condition In text books at school. He researched and found a dr. In Florida at sacred heart hospital to contact. After sending him pictures of my sons foot He confirmed diagnosis and told us he could help. We traveled from Dallas to Florida when he was 15 months old. My son had the two toes amputated and they checked the bones in his foot to make sure they were not affected. It has been a Long road, but he is 10 now and although he plays basketball and lacrosse it has started building up fatty tissue on the bottom and may start have affecting his third toe. We are now debating taking him to Scottish rite but my son is scared and says he does not want to go. I just wanted to share my story and not sure where this journey is going to lead us, but have decided that my son is old enough to be in the drivers seat and lead us to how he wants to go.
    > Hope this finds you all well, it’s amazing to me how many others have been affected by this disease.
    > Take care
    > Liz Broughton
    > Dallas, Texas
    > Lizmbroughton@yahoo.com


  17. Liz Broughton
    Sep 26, 2012 @ 16:55:38

    I am wondering if anyone is interested in face time talking. I would live my son to talk to little ones and maybe help them with any questions as he is soo good with little kids. It would be great for him too.
    If so, please email me


    • macrodactyly
      Dec 05, 2012 @ 09:02:01

      Dear Liz, sorry for replying so late but we were very busy (also because we are adopting a second child from China – She has missing phalanxes in her right hand). Xinqiao is too young and she can’t speak English. Otherwise I would have been very happy to have her talk to your son through skype. Maybe someone else can help. How’s he doing now?


  18. Liz Broughton
    Sep 27, 2012 @ 00:01:00

    Also he has a foot disease on his right foot so he only has 3 toes on that foot


  19. Karyn
    Jan 05, 2013 @ 23:18:59

    It’s been a while but would just like to say thanks to all who replied really appreciate it, Mike first time I have found someone that really understands how I feel. Well really struggling right now so think it’s about time to find a doctor that maybe can help but don’t know where to start. I live in Scotland but anywhere in UK if anyone has suggestions/ideas.

    Thanks x


  20. Becca
    Jan 05, 2013 @ 23:34:38

    Hi Karyn,

    I too am in Scotland, my son is under the care of Dr Duncan at Yorkhill Children’s Hospital in Glasgow, he is heading for his second surgery on the 15th to have a reduction in his toe (they can’t amputate as he woudn’t be able to walk so they are cutting the toe back to the joint to prevent that) at the same time he will be getting the debulking procedure through the open wound to prevent having to cut the sole of the foot. When we first saw Dr Duncan he mentioned that he had had a case that was slightly similar so he has at least a little knowledge. My only bug bear has been that they refused to do surgery any earlier which has caused me no end of problems with shoes, especially so after the custom made shoes were rubbing his feet and causing him blisters and problems so we had to stop doing that and resort to finding whatever type of shoes we could.

    I hope you find a doctor who can help you, I remember being terribly scared when the consultant at our local hospital seen him when he was just a few weeks old and basically said we have no idea what this is, google is giving us no answers so we’ll refer you to the children’s hospital but don’t be too optimistic they will know what the problem is.


  21. MacrodactylyMan
    Feb 05, 2013 @ 03:28:47

    i was born with this … disability i am now twenty and this past september had my second operation partial amputation .. and now suffer from phantom limp symdrome (Nerve pain,itching,burning, and stabbing feeling .. did i mention severe muscle spasms?) Currently fighting for disability in california where they believe i can work a 6-8 hour job with breaks .. i cant even fit inside a shoe with out having to take it off every 30mins .. after the surgery i would have to say the only good thing is that it looks a little better.. i dont have a huge toe nail on a hook anymore .. now i have a nub.. bone is at the top as well as stitches on the top crown all the way down the right side of the foot .. my disability was left in my hands because my mom didnt know what to do so ive been living like this for 20 years.. i had one prior surgery at the age of 4 and didnt seem to do anything but leave scars .. there is a lot of fat tissue around my ankle as well its barely visible but u can feel it if u push down were its suppose to be .. this has been a life long struggle .. not knowing whats wrong with my foot .. my mom didnt even know what it was called.. shoes that fit good are impossible to find .. not that one foot needs a bigger size and the other needs almost two sizes smaller .. i need a size 9.5 and a 7.5 .. disability says i should get special shoes…. i cant work …. my legs are also two different lengths left 5″6 right 5″4 causing back issues over time .. my toe is extra sensitive now and i have horrible balance ( always have due to the leg lengths) but with out the tip of my toe i cant lean forward to much or id fall .. they gave me a cane now im twenty with a cane and they still think i can work at walmart …. i go to physical therapy for my foot and they gave me percocet(pain) and flexeril(for the spasms) and something else to numb my foot … im effected everyday by this .. i wake up at night suddenly due to muscle spasms and pain i can barely sit in my college classes without adjusting my shoes … i never told anyone about this no female ive ever dated knows .. ( i dated alot . lol..) i never let this get me down i know i got to live life regardless of what i go threw … if your child has this disorder tell them
    even tho u are different and face struggles and pain i cant feel u can still do great things in this world …no matter how much pain i feel i will never show it , MACRODACTYLY HAS MADE ME A STRONG YOUNG MAN and very open minded and non judgemental .. i often enjoy my own company listing to native american flute music and thinking deeply just wishing someone in this world would understand what it feels like .. any questions just ask..


  22. Finnora
    Mar 13, 2013 @ 06:58:08

    Hi! I’m so happy I find this site!
    My 14months son has a macrodactyly on his right index and middle finger.
    I myself noticed it for the first time when I was breastfeeding him for the first time. At that time it only looked bigger than the other fingers but not so much.
    Now the middle finger is like swollen and curvy to right side. The index finger is bigger than the left index finger but not so much.
    If I compare the middle finger with mine, for the size, I think it’s bigger than mine now, the length almost same length with mine.
    It can”t be bend at all.
    I wonder if we give him therapy will it bend?
    We haven’t go to any doctor related to the case, but his pediatric had informed us two hand surgeon for this case.
    I’m confused and wondering do we need to seek doctor help for operating it as soon as possible or we can delay it as and wait until he’s older.
    Also I’m wondering does the middle finger hurt with size like that.
    The pediatric suggest us that if we operating it sooner and then have the physiotherapy it will help him to get better faster.
    We live in Jakarta, Indonesia and this case is very rare here.

    Anyone has done surgery please advice and share what have happened before and after surgery. What are the steps and etc.

    Thanks all.


  23. An
    Mar 28, 2013 @ 08:43:59

    I’m a 32 year old women from Belgium. I have macrodactyly on my right middle finger. I had several surgeries as a child. And after about 25 years I finally came to terms with it. Almost forgetting about it 🙂
    However recently the macrodactyly has started to affect the mobility of my hand, causing a lot of pain. And making it more and more difficult to write. The finger does not bend at all anymore and is just in the way. My surgeon suggested amputation
    Does anyone have experience with amputation in later life? With later in life I meant as an adult. My previous surgeries were all decided for by my parents as I was a kid. It must have been very difficult for them as not much information was available at the time.
    Although I don’t see any alternatives. I would like to know more about your experiences with the amputation.
    I have finally accepted my hand as it is now. It stands out but I’m used to it. I’m wondering what it feels like once the finger has been removed. Does it feel like something is missing or does the improved mobility make up for it?
    I know that there are worse things in live but wonder how people experience it emotionally. Is it confronting or do you get used to it easily?
    I would like to thank everbody for their posts. They were very interesting to read. AB


  24. Charity Christensen
    Apr 05, 2013 @ 09:28:23

    Hi everyone,
    My 22 month old son was born with macrodactyly and syndactyly of his left middle and pointer fingers. He had his middle finger amputated at 6 months old because his surgeon thought it may have been pulling his pointer finger along. I brought him in periodically to track the progress of his remaining bigger finger, and a couple months ago his surgeon and I thought it was time to amputate it. His surgery was last friday, and his surgeon discovered the nerve in the palm of his hand had enlarged (we thought it was just fatty tissue that needed to be debulked) and his arm was now affected as well (getting progressively bigger). He mentioned that if he severed that enlarged nerve it would be highly possible he wouldn’t have use of his hand. Also, after he mentioned that his arm was getting bigger it REALLY scared me! We have a follow up appointment monday, but like any frightened mother, Ive been googling and trying to find answers myself or even places to go to have specialists examine him! I’ve only freaked myself out more I think, because what I have found says it’s life threatening! Where do I go from here?


    • Lise
      Aug 29, 2013 @ 13:50:44

      Hi Charity! I would be interested in chatting with you. My 13 month old also has macrodactyly of the hand and her palm is affected and so is her entire arm. I was wondering if the doctors you see have said anything about what they can do about the arm.


  25. peaches
    May 24, 2013 @ 20:07:48

    hi all my son has had macrodactyly since he was 6 months .i thought it was my fault something i had done during pregnancy.he,s had 3 surgaries and the last one they removed is toe. at the age of 24. he was not happy and still has hard time looking at his foot and very rarely show his foot. he has to live with it but im ever worried about him losing more toes.. a worried mum still even thou hes an adult still worry


  26. Bri
    Jul 17, 2013 @ 14:00:23

    I’ve read all the comments left on here and I had commented 2 years ago at the age of 21. It brought tears to my eyes and hope in my heart for all of you. I’ve grown to be a beautiful woman, intelligent, and athletic and I’ve lead a normal life. Yeah it sucks I can’t wear flip flops and I need another debulking surgery on my right foot but few people know about my foot some are so accepting and encouraging others that I’ve had falling outs with have maliciously used it against me because they can’t call me fat or ugly because I’m neither it’s merely jealous girls who can’t stand the sight of me talking to anyone at the bars. I’m missing the second and third digit and it’s so displeasing to look at I won’t lie, I still cry over it and probably will for the rest of my life. I wonder why it had to be me and not my brothers or sister, and it’s just not fair for me to think that way or to blame my mother. It’s just difficult to deal with and I fully understand how everyone feels on here. However, it’s not the end of the world and God only bestows difficult situations to people that can handle them. Also, my father is a police officer and when the marathon occurred his fellow officers found limbs of children lying about and also witnessed limbs of adults, people lost everything and it’s just sad, but we have our limbs regardless of how cosmetically unfortunate it is to look at. I can hide my foot but there are others coming back from war with no legs, no arms, brain damage, and severe burns on their faces and bodies. This is what keeps me going and leaves me ever thankful. It also gave me a heart, to look at everyone as though they are beautiful and nothing makes me judge them for that. I’m so thankful for what I have, I played sports I still do, I have a degree and studied at college, I’m beautiful and yes it’s not conceited to tell yourselves that! What’s not to love? Oh my foot? That’s incredibly minor although we all think of it as a big deal and yes alot of the time I do! But encouragement is what everyone needs on here regardless of the times we feel hopeless.. as I do often but I tell myself these things to remind myself it’s not so bad it could be worse.


  27. B
    Aug 19, 2013 @ 14:29:31

    Hello! I have a 4 year daughter born with macrodactyly foot (L). She has toes #2 and #3 fused together by skin that are exponentially bigger than the rest of her toes. She also has a very large mass on the ball of her foot that really widen her foot. Toes #4 & #5 are very small and they simply sort of hug like they were never fully formed. Toes #2 through #5 do not touch the ground because of the large mass under her foot–only toe #1 touches the ground and is the only ‘normal’ toe on her left foot. She never had any issues walking. At 4 she is very active and loves to do acrobatics, dancing, etc like I normal child. Our biggest problem is buying shoes. Since her left foot is so wide and high from the ground upfront, most shoes do not fit her. Shoes run very slim, especially for girls. The only place we are able to buy her split sizes without buying two pairs of shoes is Nordstroms, but even there our selections are limited because of the width and depth of her foot. Her feet are about 3 sizes in difference. It’s her condition that makes me want to be a shoe maker!! It breaks my heart that I cannot buy certain shoes she really wants, but we’re able to for her other 3 sisters. Another interesting problem we have is that her left kidney is multi-cystic (from gestation) and now only has one fully functional right kidney. Her left kidney is gone now and her right has grown to compensate for the dual work. I know her foot condition is merely cosmetic and is very healthy, otherwise! So we are blessed! She has a very strong personality and at her age I’m sure it’s normal not to understand why she has this condition. She gets very upset when we shop for shoes and gets saddened when other ask her about her foot. As many other mothers going through this, you can’t help but feel guilty for your children’s condition. I will say that 4 year or so before I conceived her, I was on Acutane for 6 months. Acutane has a high risk of birth defects and I wonder if the drug remains remained in my system all those years and is why she had said birth defect. I don’t know. All the reading suggests this drug does not stay in your system very long. Since her birth, I’ve had two daughter with no birth defects (my oldest is much older than the other three girls). I’, glad I found this site and hope to connect with some of you through this site for support.


    • Jenn Duska
      May 22, 2014 @ 20:06:38

      Hi B…. My second son (Tyler) was also born with macrodactyly and syndactyly, on this right foot, 2nd and part of his 3rd toe… His fourth and fifth toes are completely proportional to the rest of his body but seem to be so small compared to the rest of his foot. He too has a large mass on the ball of his foot. We struggle with the shoe making as well and I would love to hear how you are making your daughter’s shoes. Nordstrom’s is where we can find sandals to fit Tyler, but we have to make his shoes in order to accommodate the depth of his foot. I would love to hear more about your story and share my experience with shoes.


  28. Rebecca
    Nov 02, 2013 @ 05:44:07

    My son is 2 years old and has macrodactyly in the middle finger, index finger, and hyperextended thumb! We have been to several doctors since he was born and none of them have suggested surgeries yet, but lately he has been crying and he can’t sleep and all he does is give me his hand like he is in pain and it breaks my heart because I have no idea what to do for him. Any suggestions would be apprecicated. Thank y’all for sharing its wonderful to hear there are others out there for support.
    May y’all be blessed


  29. valentina
    Jan 31, 2014 @ 22:59:19

    Ciao a tutti, sono Valentina e ho 18 anni.
    Sono affetta da macrodattilia di indive e medio della mano. Ho letto alcuni dei vostri commenti e vorrei permettermi di nominarvi il mio Professore che da ormai 10 anni cura la mia mano. I miei genitori hanno girato per tutti’ Italia e mi sono sottoposta ad alcuni interventi mal riusciti fin quando non mi sono recata a Monza dal Prof. Marco Lanzetta specialista della mano e da allora son in cura con lui. Immagino quanto sia difficile trovare le giuste cure perciò spero di esservi d aiuto. Imboccalupo


  30. kait
    Feb 13, 2014 @ 03:38:31

    I am 21, living in canada
    I have macrodactyly, in the left hand middle and index finger. I had my middle finger amputated when I was 2. I definitely self conscious of my hand but it hasnt stopped me from doing anything that I love. I am finishing my last year of university. Advice for young children with macrodactyly is to not be ashamed, no one is perfect and if you tell your kids that, thats all that should matter. I never got bullied because of my hand people were always curious and generally interested. I am planning on having some of the tissue in my index finger removed for cosmetic reason but other than that i live a pretty normal life, i even play guitar hero on expert using only 4 fingers. haha


  31. Anonymous
    Feb 19, 2014 @ 03:07:54

    I have macrodactyly on my left hand, I have had my middle finger removed. Why is it that all the information on this blog Is about feet and toes.


    • macrodactyly
      Feb 19, 2014 @ 09:04:35

      dear anonymous, this is partly due to the fact that many posts on hand macrodactyly still needed my approval. I apologize for this. I am preparing a table with all the stories posted so far. I hope this can help. I think that hand macrodactyly is equally prevalent as pedal macrodactyly. I am not a doctor, I only do research in my freetime for my child and I post what I find here. Unfortunately there is only scanty information on outcomes. That’s why it is so important that even adults with this condition can post their story and share their long-term outcomes.


  32. macrodactyly
    Feb 19, 2014 @ 09:05:17

    If you could provide more info on your story it would be very helpful….


    • An
      Feb 19, 2014 @ 22:07:04

      Dear All,
      Thanks for sharing your stories.
      I had my middle finger removed last year (I’m now 33) because it was starting to cause me pain and serious inconvenience. I had trouble writing, gripping, holding things…
      The surgeons did a ray amputation with a beautiful “new” hand (as I call it) as a result. I’m very happy with the new look and thoroughly enjoy the occasional manicure. I can finally wear normal gloves. I just have to remove one finger.
      The scar is obviously still visible but strangers rarely notice there’s a finger missing.
      I’m glad I had the surgery though the first weeks were absolute hell. Phantom limb pain does exist (even for a finger). I had excruciating pain for about 6 weeks and had to resort to very strong prescription painkillers. Possibly also due to the fact that the nerve was five times the normal size. Though nobody knows much about it, some research on the net did reveal that this is common in macrodactyly.
      Thanks to an amazing team of physiotherapists I regained almost full use of my hand in no time.
      The nerve still causes discomfort (occasionally pain). Further testing revealed demyelination and axonal loss. Caused by the surgery or was the nerve already faulty? This also causes sensory loss in the top of the two fingers that were connected to the “faulty” nerve during the surgery. I have had corticosteroid injections. They offer relief for a couple of weeks.
      So my experience has both good and less positive aspects.
      It’s very difficult to give advice to other persons as every case is different and there’s just not enough cases (luckily).
      To the mothers and fathers, my parents still feels very guilty (Could they have prevented it? Have they taken the right decisions in the past?…). Especially last year when I had my surgery. I had already had several as a little kid. But they really shouldn’t. And neither should you. You all do everything you can to inform yourself. The decisions you have to make are very tough. And try and remember that you take them with the best intentions.
      The best of luck to all of you!


      • michelle
        Nov 25, 2014 @ 16:17:15

        My son was born with macrodactyly of the first and second toe of his right foot. I cant tell you how scared I am for him. Reading all of your replies has brought tears to my eyes. I am seeing a doctor at boston childrens hospital and plan to have his toes amputated and debulking. I want him to live a normal life as possible. How do I find out whether or not her has static or progressive? will this eventually affect his leg? I feel so helpless and want to do the right thing by him. All I want is for him to be healthy and happy.

      • macrodactyly
        Dec 01, 2014 @ 10:32:41

        dear Michelle, thanks for writing! As far as I know only time can tell. Our orthopedic surgeon asked us to keep recordings of toes measurements, to see how much and how quickly they grow. We still do not know. She is too young (6 ys and a half now). We can only pray. I wish you all the best with your child.

      • Okema Shields
        Dec 10, 2014 @ 23:32:23

        Hello. I am also experiencing the same problems with my left hand. Do you mind telling me where you got your surgery done or the doctor you saw? I am in the UK but at this point I am willing to travel if I have to

  33. macrodactyly
    Feb 20, 2014 @ 07:43:36

    Thank you An. We really need updates on how things go on when people grow up. I am happy to hear that you are ok, although you still have some discomfort. Please, continue to follow the blog and to write now and then…


    • An
      Dec 11, 2014 @ 08:51:17

      Dear Okema,
      Dr. Louis Kinnen has been my surgeon for over 20 years now.
      He works in Brussels in the Park Leopold hospital. You can find more details on http://chirec.be/en/nos-specialistes/103209-kinnen-louis/
      Please don’t hesitate to let me know if you have any further questions.


      • Okema
        Nov 06, 2016 @ 22:59:57

        Dear An,

        Thank you for getting back to me. I know that my reply is years late. Do you know if this doctor is still operating? I have finally decided that something has to be done as the pain is affecting my life. I would love if I could get in contact with him and go over to Brussels for a consultation with him,


      • Sandra Milan
        Nov 08, 2016 @ 09:29:43

        Dear Okema, I don’t know if the situation of my 5 years old son can help you. He was born with macrodactyly on his left foot, 3rd 4th and 5th toes. Last summer he had surgery in France Paris Hopital Necker and they removes his 3rd toe, blocked the growth of the 4th and take of some fat on 4rd and 5th to avoid that the nails go inside the fat and create infections. The surgeon is fantastic, his name is Stéphane Guéro and the genetician is Geneviève Baujat. I know that he also work in a private clinic specialized for the hand. http://www.aphp.fr/offre-de-soin/consultation-4755
        Good luck!

      • An
        Nov 10, 2016 @ 10:54:02

        Dear Okema,
        Yes this doctor is still working.
        I’m not sure for how much longer though as he’s getting closer to retirement age.
        This is the link to the hospital’s website: http://chirec.be/en/specialists-and-services/doctors/103209-louis-kinnen/
        Don’t hesitate to let me know if you have any further questions.
        And good luck!

      • Okema
        Nov 10, 2016 @ 11:48:19

        Hello An,

        I got a contact number for him but his secretary speaks french. I have asked my friend who speaks french to contact him for me but she’s tried numerous times and hasn’t been successful. . She will continue to try. In the meanwhile I will just have to wait. Thank you for getting back to me. I really appreciate it.

        How do you get on with the cold weather? It affects me a lot.

      • An
        Nov 10, 2016 @ 11:55:02

        Dear Okema,
        Do you have an email address I can contact you on?
        Kind regards,

      • Okema
        Nov 11, 2016 @ 21:05:50

        Dear An,

        My email address is; okema_shields@yahoo.com

  34. Andrea
    Feb 21, 2014 @ 11:53:05

    hi everyone, my second son was born with macrodactyly and sydactyly, on this right foot, 2nd and 3rd toe.. He is 7 months old, we got an appointment at a Clinic in Hamburg (we are from Germany). Doctor told us that currently there are 2 options, 1) to amputate the 2nd toe and to correct the length of the 3rd toe. 2) to combine shortening and debulking for the 2 and 3 toe however he does not recommend to separate both toes as based in his experience he said this could affect his foot functionality.
    It was a great help to read all your comments, i think in this case it is better to try the second option and hope for the best. This clinic has a large experience in this sort of cases, so im really hoping for the best. I am worried, he is just a baby, a surgery is a big thing!


    • Jenn Duska
      May 22, 2014 @ 19:55:00

      Hi Andrea…. My second son (Tyler) was also born with macrodactyly and syndactyly, on this right foot, 2nd and part of his 3rd toe… He is now 5 years old and couldn’t be more active! He even rollerskates and plays soccer. We were also told the same two options from our surgeons in (Columbus, Ohio, US) and have opted for option 2. Our struggles now have been to make shoes to accommodate the size of his foot while keeping him active in the sports that he loves. I would love to hear more about your story and share my experience with shoes.


    • Nadine
      Jul 24, 2014 @ 10:28:22

      Hallo Andrea

      Meine Tochter ist 8 Monate alt und hat Makrodaktylie am rechten Fuss. 2. und 3 Zeh sind betroffen und zusammengewachsen (Syndaktylie). Ich würde so gerne von dir hören, was ihr nun unternommen habt. Ich erzähl dir gerne von uns. Wir sind Schweizer :). Können wir uns per e Mail unterhalten?

      Lieber Gruss


    • Sarah
      Nov 15, 2014 @ 11:02:39

      Hi Andrea, could you share the clinc/Doctor information? I’m looking for someone experienced, but since it’s so rare can’t find anyone in Saudi Arabia.


  35. macrodactyly
    Feb 21, 2014 @ 14:23:10

    Hi Andrea, thanks for writing. As you see, there are many stories like yours here on the blog. Many parents have had to make difficult decisions for their children. I am sure you will end up with the best one for your little one. Please, keep up posted on the outcome of surgery, when it is over. I wish you all the best!


    • Adventures with my Harp
      Mar 17, 2014 @ 23:03:23

      Hiya, one more story to add to the mix:

      I’m in my early 30s and live in the UK. I was born with an enlarged middle and ring finger, intitially the doctors described it as a “genetic translocation” and then when I around 20 they started saying macro-dactyl. Reading through the stories hear I was very lucky: my parents found excellent surgeons I’ve been well looked after. I’ve had 6 operations along the way and now have a very functional hand (I play harp). I’m left with a stump for my middle finger and a weird ring finger. I’ll always have to be extra careful with my hands but that’s ok.

      I think I’ve had it super lucky people-wise: I have no fear of my hand or it looking ugly and am well aware how few people notice in the first place; also I have very rarely (in fact maybe only once) had a negative reaction to my hand. I teach and play music for a living, my hands are on display constantly and it’s fine. I think I’ve probably spent an extra seven years sorting out the technical problems my hands have presented me.

      Info about the ops I had:
      Initial plan: to leave me with an adult sized finger around age 16
      Age 5: growth plates removed in middle finger (it was already as long as my mum’s)
      Age 6: debulking in middle finger
      Age 11: bone removed from center line of middle finger (it was getting very wide) and from ring finger, which was starting to twist
      Age 15: debulking in middle finger and ring finger

      Whilst I was at uni it became clear my hand wasn’t working properly, problems with stiffness and grip. I had two years of faff getting seen by the doctors again. By the time I was seen it clear that medical consensus had changed and that it was too hard to try to leave you with a “normal” finger through plastic surgery. So…

      Age 22: amputation of middle finger
      Age 27: an op to let my stump bend properly again, the caspule (tendon sheath) for that joint had got very tight and stiff and affected the whole of my hand when I tried to make a fist. The docs shredded the capsule then I had three painful (but oh so worthwhile) months of physio to get the movement back.

      Recently (aged 31) I had carpal tunnel symptoms in my hand, I have thicker muscles running through my wrist so it may be related to the m.d. Physio and a night splint fixed that. I also have ongoing physio to keep the stump joint working well. This has been really useful and my hand works much better as a whole now.

      Really glad to hear all the other stories. Just to say that it is totally possible to have a great life with m.d. – yes you will always have extra things to deal with, but that often sticks a lot of little worries in the right perspective. If anything my hand insulates me from rubbish people and let’s me find the ones really worth knowing.

      Really glad to see this project up and running – hope it goes from strength to strength.


  36. Anna
    Apr 17, 2014 @ 05:46:26

    Hello everyone, I have MD on my right hand affecting by thumb and index. I can’t say it wasn’t hard growing up with it and not feeling insecure, which is still kind of an issue today at 22yo. However, it makes me the person I am today, and I can truly say that those around me never consider it a distinguishing feature of my life. For all those whose newborn or young children are suffering with it, it’ll most likely be just fine! Don’t look at it as being a roadblock in their lives.
    Pretty much anything that could go wrong with this condition (carpal tunnel, surgical hematoma, lymphatic edema) other than amputation has happened to me in the past and even recently, but it’s still manageable. Fortunately, I can say I’m pretty well rounded; I participate in any and every sport, play the violin and now applying to become a doctor, if anything it gave me the advantage of being ambidextrous (since I’m naturally inclined to be right-handed). In fact, I think MD influenced me in proving to myself and those around me that I can do almost anything I put my mind to, that it won’t impact my life in a negative way.
    Concerning medical decisions, I would say go for the debulking procedures however, seek second opinions! Don’t be shy – you can change your mindset to positively influence your outlook on your appearance. In my opinion, there are very few people who will judge you, VERY few (in my lifetime thus far, none).
    And lastly, if you’re insecure about MD, that just means you have to let your other amazing qualities outshine it! Find out what you feel the best quality is about yourself and exploit to increase your confidence. Anyway, I hope this helps, it’s truly how I look at being afflicted with MD. I realize I’m not the most severe case, but as hard as it please try not to be entirely pessimistic about the outcome – we have to deal with the cards we’re dealt with and if you feel surgery will help, by all means go for it and good luck!
    (sorry about the typos/grammatical errors, no time for editing!)


    • Brenda
      Dec 28, 2014 @ 01:20:43

      Anna you are so right I have Md in my left hand pointer finger, and I have always tryed to prove myself and I have always felt I have! God have giving me so many talents . Your blog was uplifting thanks !


  37. Kelinda Fisher
    Apr 18, 2014 @ 10:45:14

    hi my name is kelinda my 7 year old daughter has macrodactyly on her right hand which at first was only affecting her thumb . her first surgery was at the age of 2 when they had to also do a carpel tunnel release as the huge nerves were compressing on her CT giving her permanent tingling in her hand . at the age of 4 she underwent a 2nd operation where they removed some of the bone to try and straighten her thumb and also removed her growth plate . she now has macrodactyly now starting on her right index finger which means more surgery but one thing im worried about is she had a fall a few months ago and landed on that hand . at first they thought she may have broken it but xrays showed old breaks due to the surgeries she had already undergone. but since the fall she has a huge lump on top of her hand between her thumb and index finger close to the size of a golf ball which is making it difficult for her to do anything .i know she is suppose to be seeing her sugeons again in the next month which im certain will be another operation . wat worries me is shes getting to the point she cant take it and asks me why the doctors cant just take it away . how do you explin that to a 7 year old why they cant


  38. Anonymous
    Jul 10, 2014 @ 15:05:53

    My daughter is 4 and has macrodactyly of her second toe on her left foot. She will be getting surgery to debulk her toe and bottom of her foot very soon. Im trying to find before and after pictures. She sees that everyone else in our family doesn’t have that issue and it bothers her. We always tell her that she is perfect.


    • Maureen
      Sep 06, 2014 @ 05:06:44

      My 2 year old daughter also has MD on her second toe. No other toes are affected. Our referral was just accepted for a Children’s hospital (Sick Kids in Toronto) but we don’t have an appointment yet. I’ll provide updates.


  39. Andrea
    Jul 24, 2014 @ 17:38:37

    Ich weiss es nicht ob man hier die email adresse posten kann aber gerne kannst du mir eine email schreiben. Kspandora@googlemail.com.
    Wir haben noch nicht unternommen, unser termin ist erst im Okt. Der kleiner hat auch früh mit dem Laufen angefangen, hab mir viele Gedanken gemacht wie das überhaupt gehen soll, er hat aber kein problem beim laufen gehabt und mit den schuhen ist auch kein riesiges problem.
    LG aus Deutschland


    • macrodactyly
      Dec 01, 2014 @ 14:05:05

      Hallo Andrea,
      I haven’t specified any specific rules on email addresses…. If someone wishes to share it I don’t see any problem in doing so, also because one of the main aims of this blog is to find people near you with whom you can share knowledge and experience.


  40. Betsy Coleman
    Sep 17, 2014 @ 10:10:06

    My Names is Betsy Coleman I’m 43 years old .I suffering from a rare disease called Macrodactyly, a birth defect in which toes or fingers are abnormally large. Mine is my Big Toe on my right foot.
    The cause of the disease is unknown but bone and soft tissue grows at an extraordinary rate.
    I’ve had 13 surgery’s on my toe and foot the last time I was 16 years old at Shriners Hospital in Lexington Ky. For the past 5 years I’ve had a lot of trouble with my toe and foot I can not walk much on it now and my toe is getting so much bigger now. I can not stand on my feet for very long so now I can not work over my foot Now. I called the hospital back where I went to as a Kid. They Couldn’t find my doctor or NO one Could help me, The Doctor’s I’ve seen tell me they not seen anyone with Macrodactyly and are afraid to touch my foot. I’ve been the last 5 years looking for a doctor to help me now with my Toe and foot.I’ve had not luck! So Can your show Please help me fine a DOCTOR to help me Fix my Toe and foot. I’m dont want to lose my foot. I Pray I can get back on my feet again!

    Sincerely, Betsy Coleman


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  42. Costmetic Surgery
    Nov 20, 2014 @ 21:50:34

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  43. Anna
    Nov 28, 2014 @ 21:59:46

    I was born with macrodactyly on my left foot my toes were so deformed I had several surgeries to amputate because the third toe could not be saved because of the deformity, my second toe will be amputated in one week , my last surgery was about 20+ years ago I am 48, the remaining deformed to can’t be repaired the bone has deformed where I am constantly in pain and with discomfort. I have never been able to wear high heel or converse . I hope this helps you. And I can tell you that for the past 48 years my mom has felt guilty about my deformity, I tell her it was not your fault.


    • Brenda
      Dec 28, 2014 @ 01:07:31

      I have it in my left hand pointer finger in its moving in to my middle finger, I no how you feel I was born with it. And I am now 57 … God Bless


  44. Sarah
    Dec 11, 2014 @ 08:35:27

    I’m looking for a doctor with experience with macrodactyly of the toe. My daughter has it on her 2nd toe right foot. I have the name of a hospital in Germany that we will try in a few months. I’ll keep you updated http://www.klinikum.uni-muenster.de/index.php?id=kinderjugendmedizin-onkologie


  45. Brenda
    Dec 28, 2014 @ 01:02:52

    I have had MD since birth I am in my mid 50’s female in my left hand pointer finger
    My parants had my hand operated on when I turned 13 removing the fatty tissue didn’t change the appearance by much my dr was the late Raymond Curtis in Baltimore Md never held me back from anything to much but it has gotten worse overtime now it is affecting my middle finger as well and having some pain ! I have Always tryed to hide my condition but it is part of me that can’t changed but it does scare me that it is getting worse I have never seen or heard of anyone with the condition in till I seen this website ! Please respond if you would like
    Thank you


  46. michelle
    Jan 12, 2015 @ 20:36:36

    hello everyone,
    I am just giving an update of the surgical plan for my son. He is now 5 months old and we have been to see Dr. Kasser at Boston Children’s Hospital multiple times now. After carefully weighing all the options and reading all of your comments my family and I have decided to have his first and second toes amputated. especially since they have already doubled in size. he is also going to have the second array removed and tissue debulking done since the ball of his foot is effected. I want him to have as normal a childhood as possible. after reading all of your stories and the multiple procedures needed to try and preserve the digit. We feel that if we amputate he will have a better chance and hopefully less surgeries needed over his life. As long as he is able to run around and be a kid that is what is important to us. I thank you all for sharing your stories and you are all in my thoughts.


    • Brenda Markel
      Jan 14, 2015 @ 00:43:40

      I wish you and your son the best
      I have it in my left hand pointer
      Finger my prays are with you both
      God bless


    • Richard E. Joseph
      Oct 26, 2015 @ 19:55:54

      Hi> I just made an appointment at that hospital for my 21 year old daughter. I would love to know what you think of the doctors and the facility. They seem to be the folks who know the most about this condition. She has it on her big toe (we had the next toe amputated at an early age). We have had four surgeries so far, growth plate and fat removal. In high school, she was able to play soccer and, amazingly, was the best defensive player in Michigan in her senior year. Now however, the toe and the part underneath (the “ball” of her foot) seem to be growing rapidly. It is affecting her hips because of the different gait she uses to walk. All of the doctors in Michigan, including in Ann Arbor, treat he like a diabetic. I found this hospital and this site just today and made an appointment for 12/22/15. We are seeing a Dr. May to start. Please send me any info you feel comfortable sending. Thank you, Dick Joseph


  47. Brenda Markel
    Jan 14, 2015 @ 00:40:22

    I no how you feel believe me and
    Mine seems to be getting worse
    But if people don’t like me because of my hand it’s okay ! And I find that’s it
    Hard to find a good dr I been to two
    And left crying which makes you want to stop looking to have anything done
    I wish you the best
    We are beautiful the way we are
    God has blessed me we so many
    Other things and talents that I always
    Have felt blessed


  48. Jenn
    Jan 31, 2015 @ 01:08:08

    I wrote on here 4 years ago! I have macrodactyly – right foot. Mostly 2nd toe affected with some lesser issues in the first toe. I also have little use of my 3rd toe (it curls under) due to earlier surgeries I had as a child. I am now 40, had the ray resection and tissue debulking 25 years ago. I had a different experience than many in that my foot has never impacted my self confidence or abilities. It is part of me and has caused me some minor problems in the last few years but overall is not an issue. I have done every sport imaginable, traveled the world, worn pretty shoes and boots. It has never held me back. My parents never made a big deal out of it at all. I wasn’t special or treated any differently and I never saw it as something that made me different. It really is a non issue in my life! Your child will be whoever they want to be and can accomplish what they want (unless their dream is to be a foot model!). If anyone has any questions for someone who has lived with this for 40 years and had surgery 25 years ago, feel free to ask.


  49. Marie
    Feb 01, 2015 @ 21:44:32

    Thanks for all the information posted above.
    Our son was also born with Macrodactyly and Syndactyly of this 2nd & 3rd toe of this right foot, his big toe is also slightly effected in that its bulkier than it should be. He also has excess soft tissue.
    He is now 15 months and is about to have his first procedure to damage the growth plate in his toe. The next step has yet to be decided but it will probably be reconstruction / shortening of the toe or else amputation. Its interesting to hear so many comments about continuing procedures of debulking of soft tissue, it sounds like we have a long road ahead!
    Shoes are our major problem at the minute, we have tried amending specially wide shoes to fit but nothing is working so we are currently going through measurement gathering to get custom made shoes made, most specialist shoe companies will not work with a baby so young. Our son is walking and climbing and not letting this hold him back, but he needs some sort of footwear. It would be a huge help if people would share more information on how they managed the shoe problem please?


  50. michelle
    Feb 02, 2015 @ 14:42:48

    Dear Jenn,
    Thank you so much for you post. As a parent of a child with Macrodactyly of the foot hearing you say that you lived a full life and did everything you wanted to do makes us feel so much better. Our son is actually having is first surgery this Thursday at Boston Childrens hospital so my nerves are a little shot rite now. We plan to do the same as your parents and treat it as if there is nothing different about him. I know he will be just fine but like I said hearing it from someone who has lived it really does make all the difference.


    • Jenn Duska
      Feb 02, 2015 @ 14:49:29

      Hi Michelle…. My son is now 6 and has multiple surgeries on his right foot to help try to fit his foot into a shoe. We have had a lot of success with the Children’s Hospital in Columbus, Ohio, but I’ve heard fantastic things about Boston’s. I would love to talk hear more about your son. We are planning on making a trip to Boston in the next several months to work on shoes for Tyler. I would love to meet up with you and see if we can help get your little guy shoes too. If you want, feel free to send me an email at Jenn.Duska@gmail.com.


  51. michelle
    Feb 02, 2015 @ 14:48:25

    I have a question? Has anyone every had other places of soft tissue overgrowth on the affected limb? I noticed my son has a lipoma on the inside of his knee on same leg as foot with macrodactyly. Making me a little nervous. I hope this doesn’t affect his entire leg.


    • Sarah
      Feb 02, 2015 @ 16:06:05

      Hi Michelle
      My daughter also has a lipoma on her shin of the effected foot. we’ll be soon having a MRI to identify what it is exactly. I’m interested in hearing more about your sons case, and maybe share treatment info. Let’s connect by email; sadly this site isn’t very convenient to navigate sarah.shamekh@gmail.com


  52. Karyn
    Feb 22, 2015 @ 23:47:20

    Well nearly another 2 years has went by but I finally plucked up the courage to see my doctor, emotionally it was really hard, lots of tears etc ( I know that sounds really crazy) but I am sure I am not alone on this one. I got to the stage I couldn’t go on like this. My finger is now no longer functional, doesn’t bend anymore, very painful and the biggy for me very difficult to hide. The impact psychologically for me was horrendous. Anyway I was referred to the Orthopaedic department and I couldn’t have found a more understanding doctor, he arranged for a specialist to see me. The good news is I am getting a ray amputation procedure, just waiting on the date to be confirmed. Yes I am both excited and apprehensive but will keep you all posted xx


  53. Sarah
    Mar 14, 2015 @ 12:13:25

    Hello everyone. My 22 month old daughter was born with Macrodactyly of the 2nd toe, and we recently (about 6 months ago) noticed a bulge/lipoma on the shin on the effected leg. And her entire affected leg is slightly larger.
    A few drs have said these symptoms could indicate a syndrome like: Proteus syndrome, Maffucci, Sturge-weber…
    So we will be doing genetic testing within a few weeks.
    Has anyone here had similar symptoms and been diagnosed with a syndrome? Thanks


  54. Pauline
    Mar 16, 2015 @ 22:56:05

    After 18 years i have found a great place to chat with other people who are going through what i have been for the last 18 years with my son. His left index and middle finger are affected, now he is older i am much more worried i think i would like something more to be done, for his sake.


  55. michelle
    Mar 17, 2015 @ 12:40:43

    Hello everyone,
    My son had his surgery last month is Boston. It was definitely a success and he did very well. they amputated his first and second toe and did a ray resection of the second metatarsal. he also removed as much soft tissue as possible but the girth of his foot is still pretty large because he was worried about cutting blood supply to the skin flap. he still has a cast on but is due to have it removed on Monday. I have to say it hasn’t slowed him down at all. the kid is crawling with the cast. Does anyone know a good place to have shoes made for him? Im just worried we are still going to have a problem fitting into normal sneakers.


    • Jenn Duska
      Mar 17, 2015 @ 16:08:55

      Hi Michelle,

      I’m glad to hear all went well with your son’s surgery! I made shoes for Tyler for about 5 years before I got the courage to write to a shoe manufacturer and get them to make Tyler custom shoes. I’ve sent them an email for you to see if they are able to help with shoes for your son too. I’ll be in touch soon!


      • michelle
        Apr 10, 2015 @ 14:48:20

        can someone please help? I need to find somewhere to have shoes made to fit my sons foot.

    • Lee
      Jun 02, 2015 @ 08:17:08

      Hi Michelle,

      Glad to hear your son operation is successful. I also have a son with macrodactyly in the foot as your son. He’s 3 month. So I need your helps to treatment it. So please send me the info about the hospital, doctors, and treatment process details . Thanks a lot.
      My email: levu202000@gmail.com.


  56. michelle
    Mar 17, 2015 @ 18:44:14

    thank you so much Jenn.


    • B
      Jun 04, 2015 @ 02:46:11

      Hello, Michelle!

      I, too, have a child w/ macrodactyly of the foot. Its on the left foot. She was born with it and the mass under her foot has grown proportionally to the growth of her foot. She recently had a liposuction procedure in the fall. It was not as successful as everyone hoped. We have been avoiding amputation of toes. Her surgeon even hoped it would be the last resort. It’s becoming more and more difficult to fit her foot into any shoe, but a boot. Any way, I’d love to connect with you, if possible. Our daughter had surgery in Boston as well. Hope your son is recovering well!


      • michelle
        Jun 04, 2015 @ 13:08:57


        My son’s toes were significantly bigger than the rest of his foot at birth and continued to grow. We were never able to fit a shoe on him so the decision to amputate his toes was an easy one. after the amputation we had hoped that it would be it for a while but due to the excess tissue on the bottom of his foot he will need a soft tissue debulking in September. For our family we wanted the best chance at him having a normal childhood while needing the least amount of surgeries over time. Dr. Kasser at Boston Childrens Hospital has been wonderful. He has answered my questions even when I know I have been irrational at times. All of us just want what is best for our kids. I know we made the rite decision with James and he is truthfully cruising around without any restrictions at all. even with the extra tissue. I know its scary and crazy to think amputation is even an option but we as parents need to be the rock for our children. Then go in the bathroom and cry. lol My little man is amazing and I will do everything in my power to make sure he grown up knowing he is special and loved. Not different from anyone or unable to do anything anybody else can.

  57. Janel
    Apr 10, 2015 @ 01:26:59

    Hi everyone, my son is 8 years old and he has Macrodactyly on his left hand, his pinky and ring finger. we live in Brooklyn. NY. I am noticing as he get older his fingers gets bigger and on the inside of his hand is turning a very dark purple. I am taking him to a hand doctor who is telling me that the next step would be for him to have surgery. I need a second opinion.


  58. Don
    Jun 14, 2015 @ 20:38:09

    Hey all.

    Just stumbled on this site. I am over 40, and am a University Professor with very noticable Macrodactyl of the right hand. I teach in the field of Aviation Mechanics, and use my hands to build airplanes, play piano, and do a host of other things. My parents first noticed the deformity at age 3 months. I gradually began loosing function of the last knuckle in junior high – and in college and beyond, I gradually lost function of the other knuckle.

    I guess I am commenting to say that Macrodactyl is not the defining characteristic of my life, and like anything else, it is what you (or your child) chooses to do with it. You are welcome to visit my youtube channel (1donagin) to see some of what I have done with my life – in spite of having a hand with gradually decreasing function. In many of my how-too videos, you can plainly see that my hand is not like everyone else’s hand. You can also read in the comments that people can be harsh.

    Some day in the next few years, I will probably have the finger amputated. This is because it continues to decrease in mobility, and is now more and more often associated with pain. Regardless, I refuse to be limited by my hand. For me, leaving it as it formed was the correct choice. It may be for you or your child also – particularly if they are personally secure enough not to be disturbed by other people’s reactions, or defined by their nicknames. Like anything else in life, the best decision depends on you or your child’s unique personality and circumstances.

    A pleasant day to all!



    • macrodactyly
      May 03, 2017 @ 10:13:50

      Dear Don, thank you so much for posting your youtube channel. I think it is really useful for all those who suffer with this condition and their parents to know all you have achieved in your life. Your videos really inspire hope. Thanks. For those who might have oversighted Dan’s post (like myself) 1donagin is the name of his channel. Do not miss it, it is really helpful!


  59. Elena Zini
    Jun 18, 2015 @ 05:12:07

    Buon giorno mi figlio Gabriele di 1 anno è affetto da macro dattilia al secondo e terzo dito del piede destro .il secondo dito è stato amputato due mesi fa e tra quattro mesi avrà il secondo intervento a Bologna in Italia, vorrei tanto conoscere qualcuno che ha il nostro stesso problema . Grazie Elena


    • Sandra Garnier
      Jan 29, 2016 @ 17:09:33

      Cara Elena, sono francese residente a Milano e anche mio figlio Jacopo di 4 anni e mezzo è affetto da macrodattilia al piede sinistro terzo e quarto dito, in modo minore anche il mignolo che però non supera l’alluce. Mi piacerebbe molto poter comunicare con te via email per confrontarmi con te 🙂 Andiamo a Parigi fine febbraio per programmare il suo primo intervento a giugno prossimo, è molto probabile che scegliamo la via del amputazione di entrambi le dita… Spero di sentirti presto e tanti auguri per Gabriele!


    • Roberta
      Apr 01, 2016 @ 10:06:03

      Ciao Elena, mia figlia di 2 anni è affetta da macrodattilia del secondo dito del piede destro.
      Abbiamo sentito quattro pareri: due optano per l’amputazione, due optano per riduzioni delle falangi.
      Come hai scelto il piano terapeutico? Noi siamo confusi, non sappiamo cosa è giusto per lei. A distanza di tempo dall’intervento cosa ne pensi?


      • Sandra Milano
        Apr 06, 2016 @ 07:44:33

        Carissima, anche io ho provato a contattare Elena ma non so se legge più il forum. Spero di si perché vorrei davvero condividere con voi le nostre esperienze! Io sono francese di Milano e ho un figlio di quasi 5 anni nato con macrodattilia del 3, 4 e 5 dito del piede sinistro. Dopo varie visite tra Italia e Francia, abbiamo optato per un intervento che si svolgerà a giugno a Parigi. Gli verrà amputato tutto il terzo raggio metatarsale e fatto un epifisiodesi del quarto dito cioè verrà bloccata la crescita perché ormai ha raggiunto la lunghezza del dito di suo papà. L’ortopedico mi ha detto che se tra un anno il quarto dito non è più cresciuto, avremmo vinto e gli altri lo raggiungeranno alla fine della crescita. Per le parti molli, farà una dissezione ultrasonica che permette di toglierle in modo meno invasivo per non aprire la pianta del piede che non sempre cicatrizza bene e mi ha già detto che dovremmo probabilmente, sempre per le parti molli, fare almeno 2 interventi prima della fine della crescita. Mi piacerebbe molto capire qual’è stato il tuo percorso e chi hai visto in Italia 🙂 Auguri di cuore e a presto!

      • Sandra Milano
        Apr 06, 2016 @ 08:06:48

        Roberta non riesco a capire se la mia lunga risposta sia stata registrata! Puoi scrivermi a sbigotgarnier@yahoo.fr

      • Sandra Garnier
        Apr 07, 2016 @ 15:37:09

        Cara Roberta, mi piacerebbe condividere con te le nostre esperienze. Mio figlio verrà operato a giugno a Parigi, verrà amputato del terzo dito e avrà un epifisiodesi del quarto dito. Se vuoi contattami! 🙂 Auguri e a presto!

    • Sandra Garnier
      Apr 13, 2016 @ 06:45:43

      Care Elena e Roberta, Non so se non riuscite a leggermi perché non ho avuto nessun contatto da parte vostra… Mi sembra che le nostre situazioni siano simili e mi piacerebbe che condividessimo le nostre esperienze se vi va 🙂 A presto spero!


  60. John
    Jul 10, 2015 @ 06:18:33

    Hello everyone, I’m a 15 year old male who has static macrodactyly of the right foot and am currently debating whether or not I should get surgery done. I’ve read several of the comments made here, and it sound like the after effects of surgery are pretty bad. I’m not sure whether or not to get it done, so I hope some of you could shed some light on whether it’s too late to have it done or not, Thanks!


  61. Anita P
    Aug 22, 2015 @ 23:23:31

    Was born macrodactyly first 3 toes with enlarged instep. 2nd & 3rd amputatated. Instep surgically reduced some. Foot 1 size larger than other including width. The leg is slightly larger. Huge pad bottom of foot beneath large toe. Causes me to walk on right side of foot. Have balance issues. Shriners did surgery 50 years ago. Despite all negative things I have always walked! Ugly to some beautiful to me. My heart goes out & I pray for all babies born with this. Childhood is extremely difficult with this. As an adult I just accept I can’t wear pretty shoes. But I am more than what shoes I wear. This is a worthwhile blog! Thank you. Peace of God with everyone.


    • Marlene fritts
      May 10, 2016 @ 16:43:01

      I was born 28 yrs ago with fibrolipomatosis of the left foot and macrodactyl of the big and second toe left foot. The big toe and 3rd toe was amputated and i have had multiple lipo surgeries on the foot to remove the fatty tissue. I have developed what seems to be fatty deposits on my foot that look like cystic bumps. Shoe wear is very difficult. The unfortunate thing is my initial surgeries were performed by a dr who specializes in hand plastic surgeries…so you can imagine the mistakes that were made years ago. Condition was so rare in Detroit MI that my case was written about and published in a medical journal. I may be seeking another surgery in the future to either amputate the 2nd toe or have it shaved down to be more like the size of a normal toe. Left leg is a little larger, not noticible unless you stare. Left ankle is significantly larger than right ankle and always looks like its sprained. I have arthritis in that ankle as well. Due to the enlargement of my 2nd toe i have broken it twice, most recently 1 month ago 😦 the condition does become tiring both physically and emotionally. Hoping someone has some info on an institution in the metro detroit area that specializes in these types of conditions and is willing to perform the surgery for free or low cost. I have insurance through my husbands job, but have been repeatedly told that any surgery at this point would be considered cosmetic, therefore not covered. Good luck to the mothers who are facing this issue with their children, i will say i have lived a relatively normal life. As i have gotten older and due to injuries to my foot that is where i have experienced the impairments. Otherwise i used to rollerblade and run like any other individual. Hoping to have a corrective surgery to get back to a more active lifestyle. Any info would be appreciated ☺


  62. Sandra Garnier
    Jan 29, 2016 @ 17:29:44

    Hello to all of you, I am a french mum living in Milan, Italy. My son Jacopo has progressive macrodactyly from his birth on his left foot, 3rd and 4th toes and a little bit the 5th, at the beginning it was only 1 size more compare to the right foot but now it is 3.
    It is a great relief to read this forum and I thank so much who created it! I’d like so much to exchange with you about your experiences of amputation especially Michelle and Liz 🙂
    My son is now 4 years and a half and we will go at the end of february in Paris his surgery for June, the doctors said that they should amputate his 2 toes to avoid several surgeries and allow him to have a functional foot as early as possible in his life. I am very happy to read that for Michelle and Liz, the choice of amputation has been positive but I would like to understand what change for his balance and the kind of shoes he can wear. We use to buy 2 pair of shoes for each model and we found a fantastic italian brand Naturino that helped us a lot. The second toe of Jacopo has always been folded under his foot because the third and fourth are big so it take too much space. I am afraid the second toe won’t be strong enough and that if we make his 2 toes amputated, he will risk to have hallux valgus. Someone could please help on this issue? It is 6 months that he is sleeping with a silicon tutor that put the second toe straight but I don’t if it strength it enough.
    Sorry for my english, thank you in advance for your help and best wishes for all of you!


  63. Michelle Holsworth
    Feb 01, 2016 @ 14:52:02

    Thank you Anita. It really helps us mothers to hear that people born with this have lived wonderful lives regardless of the obstacles that lay before them.

    Michelle Holsworth


    • Sandra Garnier
      Feb 01, 2016 @ 16:16:46

      Yes it’s true thank you so much Anita! Helped a lot to read your message 🙂 Peace of God with you too!


      • HappyinMI
        May 12, 2016 @ 04:30:07

        Hello all!

        So happy to have found this blog!

        I am a 28 yr old woman who has macrodactyl and fibrolipomatosis of the left foot. I have had multiple surgeries theoughout the course of my early adolescence, the first right before my first birthday. Big toe and second toe were affected, as well as fatty tissue on the pad of my foot. Big toe and 3rd toe was amputated before i was 1. Losing the 3rd toe makes no sense to me to this day, metatarsal was left and has shifted and dropped to the bottom of my foot overtime, causing me pain. I know some of the surgeries i have had caused more harm then good. But i guess with a plastic hand surgeon as the Dr leading the team what could i expect lol. My case was so rare in my hometown of Detroit MI it was published in a medical journal. Many years of both physical and emotional challenges due to the condition. Shoe wear is very difficult for me. Would love to be able to wear even tennis shoes. Somehow i manage to find a pair or two that work for a season. I find i walk on the right side of my left foot pretty often. Also my left leg is very slightly larger than my right. My left ankle permanently looks as if i have a severly sprained ankle. Arthritis pain as well. I have broken my macrodactyl toe twice, most recently a little over a month ago:/. Hoping to have more surgeries in the future to hopefully correct some of the mistakes made by previous surgeries. Also have ganglion cysts growing on my foot as well. For the parents out there raising children with the condition and posting on this site, keep up the love and care you show them every day. The beautiful thing is this condition does not seem to be much more than a physical difference, albeit at times a discomfort for some, but does not take away from the mind and soul:) keep encouraging your children to be all they can be!! I have accomplished and seen more in my 28yrs than most 50 yr olds i know. I am newly married to a man who thinks i am the most beautiful woman, inside and out, that he has ever met. We hope to have children one day, and with the life knowledge i have obtained by living with this condition, i have alot to teach my children. May God bless your journey in each individual way you are led to embrace living with this condition 🙂

  64. Dani
    Aug 20, 2016 @ 02:38:17

    After reading a lot of the earlier posts I feel like my story might help some others. I’m 39 and have MD affecting my 2nd and 3rd toes on my left foot. Until just a couple years ago I didn’t even know what MD was – I just knew I had weird toes lol. I’ve never had any surgeries even though my toes make my left foot almost 2 sizes larger and quite a bit wider than my other foot. I simply buy the larger size of shoe and put a regular insert into the other one to make it fit better. As a child I had NO issue with my feet. As I got to my teens and year 20s I got more selfconcious and started avoiding wearing open toed shoes. At some point in my 20s I noticed that the ball of my foot would swell if I wore heals out dancing or went snowboarding, but other than that still no issues. A few years ago I noticed that my toes on that foot didn’t bend anymore and gradually since then they have developed some arthritis which has increased the width of that foot and does sometimes now cause a little pain. For the first time I’m considering seeking some advice from a specialist and possibly having surgery if I’m a candidate. The really funny thing is that about a year ago I stopped being selfconcious. I now realize that no one is actually looking at other people’s feet – seriously! – how often do you look at other people’s feet. I’ve been with my husband for 7 years and no one in his family has ever noticed. When I mentioned having surgery on my feet my inlaws looked at me like I was crazy. I’ve been barefoot around all of them hundreds of times and they never noticed. I now wear flip flops and have pedicures and no one has ever batted an eye. My point is that sometimes our issue is really just in our own heads. For all the parents struggling with decisions I would encourage you to listen to the doctors and do what you feel is best for your kiddos, but please try not to overreact. You didn’t do this to your child and your attitude will determine how they view the issue. My parents decided that my toes weren’t slowing me down a bit and until they caused me pain they were going to hold off anything drastic until hopefully I was old enough to make the call myself – it worked – I made it to almost 40 with practically no issues. I played every sport my school offered, became a lawyer, climbed 14ers, ran 5Ks, got married, had a child and trained for and competed in bikini competitions. My toes impacted nothing. My parents always just told me I was born that way because God wanted me to be special. I accepted that and explained my foot that way to my daughter who now loves telling her classmates about her special mommy who God gave funny toes. All cases are different, but we are all special and going to be just fine MD and all. 🙂


  65. Michelle
    Aug 20, 2016 @ 12:23:56

    Thank you so much for writing about your history and the beautiful life you have accomplished. It is very hard at times as the parent to see the light at the end of the tunnel. My son is about to go for his fourth surgery. This time liposuction on his foot and the fatty tissue built up on his knee. They don’t have much hope with this procedure and the amount of extra soft tissue on his foot but it will hopefully fix his leg. The next step may be a chopart amputation of his foot. As his mother I am trying the way the options and do what is best for my son. The though of amputating most of his foot makes me physically ill but if it mean he won’t need another surgery I have to make that decision. As of now the tissue is growing back every 6 months and shoes are impossible. I don’t want having multiple unsuccessful surgeries to affect what a beautiful child he is. Any thoughts anyone??


    • Dani
      Aug 20, 2016 @ 22:59:55

      It sounds like your son has the progressive form of MD which if I understand the types correctly is far different than the static type I believe I have. Is the Dr you’re working with an MD specialist? I know there aren’t very many so if not maybe a consult with one of them electronically might help. If the Dr is and they say amputation is the best option then I would take the advice. Kids are resilient – he’ll adapt to whatever he needs to – especially with a mom as caring and supportive as you clearly are!


  66. Okema
    Nov 17, 2016 @ 14:51:47


  67. Marcela Neale
    Jan 22, 2017 @ 10:27:58

    I’m 16, I was born with one thumb larger than the other, I had never thought much of it and people embraced it, I never worried about it, neither did anyone else because it never caused any problems up until about 2 weeks ago when i started getting pins and needles and pain in that hand every night and still am along with small lumps of flesh fat or skin forming. I started researching and made a guess that I have isolated macrodactyly that is proportionate to my growth, should I get this checked out or am I overreacting ?


    • Marcela Neale
      Jan 22, 2017 @ 10:32:54

      Note: I had no idea this condition existed before a couple hours ago. 2. Cosmetics and looks don’t bother me but would surgery be reccomended. 3. Would my parents have been told if I had macrodactyly when I was born?


  68. Danielle
    Jan 26, 2017 @ 22:10:07

    I’ll be right up front that I don’t know much about how macrodactyl progresses, but if you have symptoms that have occured suddenly I’d suspect they may be related to something else and you should get it checked. My macrodactyly is static so I can’t really comment on how fast the progressive type moves, but I can’t believe it’s over periods of 2 weeks without any sign of progression before. If it is macrodactaly it’s possible it wouldn’t have been diagnosed when you were born – it’s pretty rare and even now most doctors I’ve spoken to have never seen a case of it. I’d say show your parents what you’re noticing and go to the doctor just to be safe.


  69. Okema
    Feb 01, 2017 @ 13:02:55

    Thank you. I will look into thathe as soon as I grt the chance. Really appreciate it.


  70. Linda
    Mar 06, 2017 @ 03:20:49

    I am 65 years old and from reading many of the blogs, I think I win for being the oldest person so far to write. I have macrodactyly (or localized gigantism as it was called when I was born) of my right lateral leg and mid foot. I’ve had five surgeries to reduce the size of the foot so I could wear the same size shoes and I don’t regret those surgeries. I now have just the outside two toes on my right foot but I think because most of my surgeries were done when I was quite young, I have no balance problems. In fact when I do yoga I have better balance than most people in the class. I want all the parents to know that we are not defined by having a special problem. My family always treated my foot with a sense of humor along with compassion. My brothers told me it was cool that I could play shuffleboard without a stick….you get the idea. My medical care exposed me to healthcare providers and that exposure was very positive so I ended up going into the field myself. I love working in healthcare and have shared my story with many of my patients even though I work in women’s healthcare. People frequently ask me if I’ve hurt my ankle because it is so big, or why I’m limping if I happen to be having a “bad foot day”, but I think that has just made me a very approachable healthcare provider. The good news is there is a lot better selection of footwear for foot macrodactyly people to wear now than when I started in the ’50’s and 60’s. Let me know if anyone needs specific brand name suggestions.


    • Sarah
      Mar 07, 2017 @ 07:23:07

      It’s so nice to read your post. My daughter is almost 4 and has a similar condition. I try to stay present and not worry about the future, but sometimes you can’t help it. Your post made me feel happy that your life was not impacted negatively and you married and had children. Thank you so much for taking the time to post. If you would like to stay in touch, it would be nice to have someone to share experiences with here’s my email Sarah.shamekh@gmail.com


  71. Danielle
    Mar 07, 2017 @ 17:10:23

    Linda – I love your post. I thought I was the oldest on here (at 40), but I think I just may be the oldest with no surgery yet 🙂 though that may be coming in the next couple years. You are so right that macrodactyly doesn’t define us. It’s actually had no impact on my life with the exception of a few “bad foot days” as you called them (love that by the way) which didn’t even start till I was over 25 and usually for me those are because I went dancing in tight heals or stood at a sporting event all day or something else equally as silly and maybe a little cute shoe envy over the years for things I really just couldn’t wear. My parents didn’t have the internet when I was little so I while I’m sure they were worried they didn’t have the support parents have now and yet they treated my foot just as yours did for you. A few jokes, a quick explanation that I could have surgery if I wanted but they didn’t want to decide on my behalf and risk me having pain I didn’t have at the time, and some inserts for my shoe for the other foot since I had to buy them 2 sizes too big to accommodate the macrodactyly toes. All in all just not as big a deal as it seems. So glad to read your post and hear your story. I appreciate it as much as the parents do because I’ve worried a little about how my foot might react as I get a little older. Glad to hear that all is good in your world. 🙂


  72. Liz Broughton
    May 02, 2018 @ 02:54:10

    Just updating site with my sons story and his macrodactyly. My sons name is Preston and he is now 16, a sophomore in high school, driving, and very involved with school activities! Although after having surgery there is still signs of the disease we have left any future decisions up to him as far as bulking and appearance. He wears the same size shoes and wears orthopedic inserts to help with arch. He is very motivated to help families and kids who also deal with macrodactyly. If anyone would like to talk please feel free to contact us at email below and we can connect for him to answer any questions or concerns you might have. Hope this finds all well. Lizmbroughton@yahoo.com


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