Our stories

In this section we tell about our stories.

If you would like to write your story here, please, do not forget to add the following details:

– age of your child at present (and at the time of diagnosis)

– affected finger(s)/toe(s)

– surgery (age, short description of operation(s), results, clinic where surgery was done); I would be grateful if someone who did not do any surgery at all could tell us about his/her story.

– current situation (including comments on whether you are or not satisfied with the final outcome in terms of your child’s quality of life).

Thanks in advance!

4 Comments (+add yours?)

  1. Yajaira
    Mar 08, 2012 @ 15:55:52

    Hi, my name is Yajaira

    I was born with Macrodactyly in 1989 on my right foot. My family calls it the special foot also. I have had sx on my foot 5 times since birth. My last sx was when I was 18. The first sx I had was on my middle toe next to the big one which was removed due to cont growth. The second sx was on my big toe it crossed over then they stopped the bone growth with the 3rd sx. The last two sx was debulking any of the tissue. Now that I am 23 years old I have been looking around for a doctor that will help me. I have so much pain in my foot when it rains, when it’s cold, I can’t wear heals anymore and I can’t stand for too long. Most doctors tell me they rather not do anything to it because of the nerves. I work two jobs and go to school and I am very active but due to my foot condition it’s slowing me down and I can’t do what I want. I pray and hope the best for your baby girl. I love her name. How do you per nonce that? (Xinqiao)

    Reply

    • macrodactyly
      Mar 09, 2012 @ 17:52:14

      Yajaira, thanks a lot for posting your story. There’s much need of people sharing their experience with macrodactyly. My daughter’s name is pronounced as Sinciao. We liked it as well, this is the reason why we didn’t change it.
      Sorry for not posting for a long time but our little one keeps us busy😉
      We had a second x-ray a few weeks ago and we will have another one in September. After that we will the surgeon for the second time, for the follow-up visit.

      Reply

  2. Sara Merino
    Dec 22, 2012 @ 10:25:19

    Hello, my name is Sara and I am a mother of a 1 year old daugter called Laia. We are from Spain.
    Laia was born with macrodactyly on her right foot, on the second and third toes.
    I dont know yet if it is static or progresive. We had Xray on the 6th month and we will have xray again after Christmas, to compare the growth. Then the doctor will take a decision.

    We live in an small city of Spain where, of course, there are no specialist in such a strange issue, but we have got in contact with one specialist from Valencia, call Doctor Cavadas. he is called “miraculous doctor” because of the excelents results of his surgeries.

    I will keep in contact with you, and keep updated.

    It has been great to get to know people that sare the same problems!!!!

    Sara

    Reply

  3. Amber
    Aug 05, 2013 @ 19:14:56

    Hi,
    My name is Amber and I was born with Macrodactyly of the left middle finger in 1962. At that time the doctors had no idea what they were looking at, but they eventually diagnosed me correctly. They amputated the middle finger after an attempt to strip some veins to stop the growth. I have grow up with 9 fingers and most people never notice. I have had at least 4 surgeries on my hand. The left finger became enlarged a little and crooked, so it was decided on my last surgery to remove the upper joint and shorten the finger. The finer has become immobile from the middle knuckle to the tip, but its is still functional.

    I know I was born with this defect but I look at it as a blessing to some degree. I grew up in an amazing area and I say this because I went through 16 years of school without one person saying a negative remark about my hand. I guess I also need to thank my parents for that because they never let me use it as an excuse for anything. I once tried to get my high school typing teacher to cut me some slack but he just rolled his eyes and said, ” Your a smart girl, you’ll figure out how to keep up” and I did!!! I look at it this way, it’s only a finger. I have 9 other ones to do the work. I never let it bother me and therefore it never seemed to bother anyone else. I’ve always had great friends and family and or that I am blessed. I always tell my boys that nobody is perfect, but God makes a few unique ones like me!!

    Reply

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