Skeletal dysplasia please help

Lydia_2

Please will someone help me. I know that we can't ask for medical advice on moneysavingexpert but can anyone help me find a website that can help me with this please? I'm trying to find websites that support parents who are expecting a chlld with this condition, but I can't find one.

Bossyboots

Have you looked at either of these two sites?

http://www.esdn.org/diagnosis.html
http://www.restrictedgrowth.co.uk/diastrophicdysplasia.php

pavlovs_dog

i tried google but didnt have much luck

only things i can suggest are:

ask at doctors/hospital - can they put you in touch with any organisations (even if it is a general one eg for parents of disabled children, as a starting point?

are there are books in your local library on the subject? they often have contact numbers in the back

have you tried yellow pages? its a long shot i know, but nothing ventured, nothing gained

bethscott1970

try contact family at http://www.cafamily.org.uk/Direct/d29.html they are pretty good at putting parents (or future parents) in touch with families who have experience in various conditions and can advise and help.

Lydia_2

Thankyou Bossyboots, pavlovs_dog and bethscott1970 ror your replies. I'll have a look at the links. Thankyou. I wish I could tell you how much your help means.

Ellie2758

You could try Contactafamily. When my son was diagnosed with osteofibrous dysplasia they found us another family who had been through the same thing. It was really helpful at the time as we couldnt find out anything about it.

Ellie

Oops just noticed this was the site has been recommended.

lucym

We found our health visitor very helpful …

As for sites to visit;


http://www.lprf.org/

http://www.magicfoundation.org/www/docs/111/rare_disorders.html

http://www.hgfound.org/

lucym

Another thought…we found a yahoo group for our daughter’s condition…worth a try. Google has groups too.