OUR STORIES
Following the link below you will go to a pdf file containing a table summing up all our stories.
It is still a draft which only contains details on people who wrote comments here on the blog.
At first I had thought not to mention the nick name; however, I then realized that this implied a greater difficulty in filling in updates to the stories should they become available. For this reason, if anybody wants me to remove the nick name or the entire row relating to his/her story, do not hesitate to write me. However, you should also remove your comment(s), since they are all still here.
As you will see I have tried to put together people living in the same area, so that maybe you can find someone near you and share your experience privately.
It would be great to have updates on people who wrote in 2011 or even more recently. How are you/your kids doing?
OUR STORIES (last update on December 1, 2014)
macrodactyly 
Feb 19, 2014 @ 11:01:24
Romania, Cluj
Female/3 yrs
Left hand, middle finger
Observation
Children hospital, Cluj
Feb 19, 2014 @ 11:03:51
Hi Cristian, thanks for adding up your story. I am still compliting the table and I will add you ASAP. I wish you all the best for your child. Do you know if her form is static or progressive?
Feb 19, 2014 @ 16:47:36
I don’t know. We measure monthly all fingers to calculate growing proportion.
Feb 27, 2014 @ 00:00:08
Hi I have Macrodactyly and only just was told what it is.
I was born in Edmonton Alberta Canada,
I am Female 21 years old
Right Hand Middle finger
I am looking to get surgery and am looking for surgeons who specialize in Macrodatyly. If anyone knows who specializes please
Thanks.
Jill
Feb 27, 2014 @ 00:00:58
Hi I have Macrodactyly and only just was told what it is.
I was born in Edmonton Alberta Canada,
I am Female 21 years old
Right Hand Middle finger
I am looking to get surgery and am looking for surgeons who specialize in Macrodatyly. If anyone knows who specializes please please let me know.
Thanks.
Jill
Sep 16, 2014 @ 15:24:27
hi to all my son has this on his right foot it started when he was 6months. and has grown he has had 3 operations. and his 4 th one he has had his middle toe amputated . he is 31 yrs old now and underneath his foot and along with the remaning toes are still growing. its a rare thing . but I doubt it will ever stop growing. . the surgen wasn’t much help at all . just wanted to remove his toe and nothing else hope this help anyone
Jan 16, 2015 @ 05:52:37
Hello! I am 29 year old girl and I have this on my left hand, on my index finger and slightly on my thumb…it’s just a bit fatter than my right hand thumb. Congenital. I guess this has caused a lot of problems over the years- I only found out what I actually had a few years back- and that was from my own research. I have learnt to hide it by also keeping a clenched fist 🙂 People don’t realise that I have it unless they spend time with me, or hear from someone else (Yes, pathetic- people have always spoke about my finger, especially as a child). It does cause me a lot of stress if people try to look at it, or I catch people looking at it haha- you would think at my age i would just get over it! It’s been there all my life! But I think I’m just that ‘type’! I have never gotten surgery- my mother was against doing anything to it as a child, especially when she heard all the things that could potentially go wrong. And now as an adult, I don’t think that it is so bad that it heralds the need to attempt surgery or chop the thing off. I do understand that some cases are more severe than others, and that surgery can be the best option on a case by case basis. I guess I’m lucky that it is not so severe that surgery is necessary. Not to say that my finger isn’t noticeable…it is! Anyway thought I would say hello, share my story, see who else is out there! We are special anyway… such a rare disorder! I am in Australia, but I am Irish, my name is Avvy. 🙂
Jan 25, 2016 @ 15:26:28
Hey Avvy, i have the same problem,lol ,and now i am 15 years old and i am thinking to make a surgery…
Jan 19, 2015 @ 00:05:08
Hi, sounds familiar, that’s how I found out what I had, I used to be able to hide it with a clenched fist and believe me I would do anything so people wont get to see it, I have quite a few years on you and I know I will never get over it, so can relate to that. My middle finger is affected, it is now non functional as I can’t bend it anymore so each day it gets harder to hide. I am in a lot of pain but can deal with that. I have never had any surgery but after 3 years I have finally found the confidence to go see someone about it. I will see a specialist next month so fingers crossed he can help. This does effect everyone differently and we all cope and deal with it the best we can. I am grateful that I am healthy otherwise and have a good life and loving family. Good to hear your story. Take care x
Dec 30, 2016 @ 14:42:40
Hello All,
My son, Preston is now 15. We live in Dallas, Texas and he had surgery on his left foot 2nd and 3rd digit with ray resection when he was 1. He also had a bit of the disease in his 4th digit, but the doctor did not do anything with it hoping for the best. Now 14 years later, Preston has just started high school and played football. The toes that were amputated have not come back, but the 4th digit has started bulking up as well as the bottom of his foot. He wears the same size shoes so that has not been a problem. At this point, he says it is sore sometimes, but continues to do normal teenage boy activities. We have left it up to him to decide if he wants further surgeries, and he has chosen not to do anything at this point so he can continue to finish out his high years playing football and being actively involved. He has face times a couple of families from this site to help their younger kids if they have questions or for just peace of mind. It has been great for him to talk to others as it has helped them as well as himself. If you or your child would like to keep in touch, please feel free to email me at lizmbroughton@yahoo.com.
This entire process was hard at the beginning, but at this point we continue our lives as normal as possible and forget some days that Preston even has this condition. He have never hid it, and when he is asked about it he just tells people he has a genetic bone disease and the doctor amputated them. I believe that knowledge is power and making sure that my son was able to be confident would truly be a test of his character and the man I want him to grow up to be.
Thank you for having a place for families like ours to be able to connect with those all over the U.S. and the world. We felt so alone, when our journey began 15 years ago. It is nice to have a place to go to hopefully help others that may be starting where we did.