Hi! My name is Cecilia and I live in Sweden with my family. Our son Gabriel (3 years old) was diagonsed a week ago with Acrodysostosis. It is not 100% sure yet but we feel quite sure the diagnosis is right based on what we have read on the internet about the disease. I am happy to be a support for you if I can. How is your daughter now? When did you get the diagnosis. You can email me on [email protected]
Best wishes and I look forward to hear from you soon! Cecilia ↑ |
My daughter is 7 she was just diagnosed with acrodysostosis I'm lookin for other people that may have some insite on wat to expect my email [email protected] ↑ |
my 25 year old son has this condition, he was diagnosed at about the age of 8-10 ↑ |
My son is currently 12 and has been diagnosed with Acrodysostosis since around 1 years old. I have just recently started a group on face book for families affected by this genetic condition. Also I am always looking for anyone to discuss issues with. My old group has kinda disappeared over the years and I have been trying to find all of them. I have learned a ton of stuff over the years and would love to share it with you. First I can tell you, almost all the kids who have Acro. tend to look alike, one thing we figured out, that wasn't in any searches, all the kids have different shades of red hair, from bright red down to brown red. Please feel free to go to facebook and look up acrodysostosis or email me @ [email protected] Look forward to hearing from you. ↑ |
i work with a young lady with acrodysostosis. i will visit your blog ↑ |
I have been trawling websites looking for others with experience of Arodysotosis, our daughter is awaiting test results for confimation and it’s been 8 months since we first had tests with the genetics dept at St Guys hospital London but we are 99% sure that it’s Acro.
I have tried facebook, but cannot find any groups?
Any assistance with links to other people or information and experience would be greatly appriciated.
Many Thanks
Phil Woods ↑ |
Sorry I should have left my email [email protected]
or personal email [email protected] ↑ |
Sorry I should have left my email
[email protected]
or personal email [email protected] ↑ |