How old were you when you were diagnosed, how are you today? I have a toddler with a possible type of EDS, awaiting diagnosis. Thank you.
Are there any adults with EDS? (Ehlers danlos Syndrome)? ?
Posted in Uncategorized.
– February 8, 2010
4 Responses
Stay in touch with the conversation, subscribe to the RSS feed for comments on this post.
this is the wikipedia link with details of this disease http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome ,but sure u can have it as an adult. well read the symptoms in the link and go to the doc immediately to see if he is ok.
my friend in idaho has it. she wasn’t diagnosed til about 35 , that was about 12 years ago. there are very few people with this, unless things have changed lately. and then at that by age, makes it harder to diagnose. she traveled the country talking to different dr.s, clinics and people with like symptoms and this took years. I’m sure you shouldn’t have to experience that now. there is an org. I’m sure if you’ve looked on the internet you will find. one of her oddest and hardest to diag., why her ribs kept popping out of place. if you like i will see if i can find her, i lost track about 6 yrs ago. but i know her family.
After the suggestion of a friend i’m looking into getting tested for EDS, it would explain why my joints are so loose and I can dislocate several major bones. It would also explain the easily bruising. If I do have it i’m 23 i’ll probably be 24 before I have the answer of if this is why I have so many problems.
My husband has Type II EDS, and he is 30. He was diagnosed with it while I was pregnant with our first child–he had suffered a lifetime of pain and doctors not believing him when he said he had a problem. He still suffers pain daily, uses a cane, is looking into leg braces, and is on permanent disability. His geneticist has said that he has a more severe case of it than others. On the other hand, there are others who have it worse than him at a younger age.
Our son most definitely has it (he is 4, and his signs are very obvious). If our daughter has it, it’s not as severe because we don’t see the signs in her. As devastating as the diagnosis is, feel lucky that your child has the diagnosis now so that you can take preventative measures to help him live a better life. Please do your best to find a geneticist or other doctors that have experience with EDS, otherwise they can do him a lot of harm. I don’t know where you live, but our geneticist told us that there is a sports-medicine complex in Seattle that has a concentration of doctors that specialize in treating EDS patients. Maybe there are others around the country too.
This website is also a good place to start for information. http://www.ednf.org/