Ehlers-Danlos Syndrome Support Group

My daughter is also 5 yrs old and has type 3 EHlers danlos... She suffers from alot of pain in legs and muscle's now where going thru having to get tubes in her ears ASAP but am so scared to do it with bleeding and all... How long has your son been DX with it??

Hi my niece is turning 5 next month. Her mom has been who has EDS has been planning to celebrate her quince aneros on her fifth birthday, because she does not think she will be around in 10 years (she is 32 now)....
Yesterday her mom found out that her daughter also has EDS, she does not want to tell her, or any of her family.
I am really looking for some support for this family I live about 30 hours away. They live in central California,

You may want to consider joining the Ehlers-Danlos National Foundation. The cost of membership is small. The website, once you're up and running, has great depth of information and resources. Check it out. I was recently diagnosed, though I'm not 5 years old. But, I'm sure you'll find many people in your situation. I also found some interesting and informative Youtube videos by searching on their site.

I have EDS 3. I think the scoliosis is a different type. I have some similarities and I have step kids with EDS too. i am newly diagnosed so I dont have a vast knowledge or anything and im in the uk. but I am here online if you want to chat.

I also have a son age 5 and he has been diagnosed with EDS type 3 and low muscle tone. They called it hypotonia. I am sad to say that according to the geneticist this is a rare disorder that with therapy can be maintained but will never be cured. Many times these disorders come with multiple problems and my son has also had 3 sets of ear tubes so I understand the concerns of the surgery. Please also be aware that with this condition, it is also a danger with certain types of anestetic so please ask all the questions you can and give all the information possible before going forward.

Hi!
I have a 7 year old son who was diagnosed last year with Ehlers-Danlos (hypermobility type). He has declined in fine and gross motor skills and has also cognitively lost ground. He does not complain of pain or fatigue, but I'm concerned this has played a role in his academic issues. (He's currently in 1st grade.) He receives OT & PT. We just saw a new psyiatrist today who will continue to follow him. I'm looking for any information.... Thanks!