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My beautiful 3 1/2 month old daughter was born with this condition. I am looking for other moms who have a child with this disorder. There is not a lot of information available on it since it is somewhat rare. I am looking for any information that I can possibly get my hands on. Mainly I'd like to know what the outcome has been for other people with this disorder in terms of hand usage. Thank you.
I read about a group called aussie hands which is a support group for children and adults with hand differances in Sydney's Child a few months ago. They have a website that you should be able to google.
Hi! All three of my children have this condition, as does their father, grandmother and their great-grandmother - it has been traced back for generations. None of my children or their father etc have had any problems with it - there is nothing that they can't do and MIL even plays the piano. It can be linked with short stature in some people, but my DH is 6ft, and the kids are average height. There are no other skeletal problems connected with it either. it is quite a strong gene too - there is a 50/50 chance every time we had a child that it could have it, and so far we are 3 for 3 - I don't know if this baby will have it yet either, but it is highly likely.
Is there anyone else in your family with the condition, or has it just appeared? Chances are that if it is in the family, your daughter will pass it on to one or all of her children in the future.
And you don't even notice the condition after a while and it had never been a problem for my DH at school either (in regards to teasing etc).
If you like, I have some great info on it and can email you the links if you give me your email address.
HTH.
Hi Sherri!
No one in my family has it. My DH is adopted so we are not entirely sure of his background. We are almost certain that neither of his biological parents had it due to health disclosures at the time. So it does seem like it came out of nowhere.
Did anyone in your family have surgery? It seems like there some pretty amazing techniques out there. She is seeing a specialist. She’ll have x-rays taken when she is 6 months to see what we the entire picture is. At this point they still are not sure if she has all the bones in her fingers, etc…
May I ask where you are located? I would like to find a support group so that when she is older she can meet other kids with the same condition so she knows that she is not alone. My DH and I forget about it most of the time which I guess is a good sign. The specialist said that if we treat it like it’s not a big deal then it won’t be.
I would love the links. My address is lisvarner77@yahoo.com. Thank you!
Hmm, it is unusual to hear of it just popping up like that, but it has to start somewhere though and if your Dh was adopted, it is possible that it is in his family somewhere. No one in DH's family has had surgery, as it isn't something that can be corrected by surgery. Dh's family and the kids have type A1, which is the lesser one in terms of disfigurement - they simply only have two bones in their fingers and not three which gives them one finger joint and not two (sometimes it can also be that the two bones on the end of the fingers are both really short and fused together, giving the appearance of only 2 bones). Lindsay was x-rayed at 2 days old and there were no other problems with him, but one thing that might happen in the future is that both Dh and his mother have trouble with their feet and wearing good quality shoes is a must as the bones in the toes and feet are affected too in some cases. It has been linked to chromosome 2q35-q37 and we were asked if we wanted to participate in a study of it, but we declined as we felt there was no need for it.
I am in the Riverina area of NSW, but I haven't come across any support groups as yet for it.
I will email you the links and they should get you started.
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i have a handsome son who will be 4 dis yr..2010..and he born with d same problem..plz dont let that stop u from loving ur child its normal..he does everyting normal and i neva make it a problem..i love him..u can email me at sanjanasirju2000@hotmail.com and we can chat more ok bt send me a message first so i'll no who it is..tc..say hi 2 d lil princess 4 me..bye tc