I liked reading your story. It helps me feel better that my daughter is'nt the only one living with this disorder. She was finaliy told that Ehlers Danlos is what she had a 5 1/2 or 6 years old. That was funny because she was born with it. She had hip displacia in both hips at birth. And she was like a rag doll very floppy. She has type three of EDS. She lives everyday to the fullest. The doctors said that she would not walk. But they were very wrong. She even rides a bike. My daughter Angel is my Angel. I admirer her more and more everyday.

Your story was very interesting. My 16 year old daughter was diagnosed with EDS in January. Her first dislocation occured while also playing volleyball. Since January she has had over 50 subluxations of her fingers,knee and her hips. Her jaw recently locked shut for 3 days. We make many trips to the ER. There are no doctors in our home town that are knowelegable of her condition. We will be seeing Dr.Lavellee in November. Hopefully we can get some answers to our many questions. Molly has always been a happy,cheerful person and some how continues to smile thru the pain. I am very proud to be her mother.

Great article, I was diagnosed with EDS four years ago when I was 45 years old. Although I had symptoms for many years it took a physcian with sharp clinic ability to finally provide the diagnosis. I think the most difficult part about having EDS is finding a doctor who knows how to treat it.

I have EDS and am 55 years old. My knees have dislocated at times and it is very painful. I was diagnosed with back problems last year. I have started some careful weight training in the past year and it seems to have helped my back and joints.
EDS runs in my family. My mom lived to be 76 years old.

im 20 I was diagnoised when i was 15. Doctors thought i was crazy, we didnt catch the dislocations right away thought they were sport injuries when it didnt show up on mri i was told i was crazy. I cant weight train cause to much pain but not stretching when doing cardio work.

My son is being genetically tested for EDS. When you are searching for what is wrong with yourself or a relative, check your genealogy & note the medical info.; observe & listen to your relatives. They will give you information whether they know it or not because we tend to talk about it & some external symptoms are obvious when you actually look. I found pictures of hypermobility and pectus carinatum of family members. The same genealogy line had three generations of blindness, and it was at that point I felt something hereditary was going on. All the symptoms pointed to a connective tissue disorder & then pointed to EDS, but I still need the doctors to confirm this. We have a great family practitioner who didn't think I was crazy & referred us to neurology. He then referred us to a neurosurgeon for a related problem and he is doing an MRI. They are also going to do genetic testing. If you feel there is something wrong, don't give up. It's the not so obvious that finally clued me in, and you won't only help yourself, you will help your relatives and others.

i am 12 years of age and by the age of 2 i was diagnoed with elerdenlose syndrome

my 10 month old son connor has been said to have type1 eds. i was lead to believe it wasnt that bad by the stupid genetics dr at our childrens hospital. but after researching it . i see i was miss lead. he is so weak that he is just now at 10 months starting to hold his bottle and it has to be a small 4oz bottle for him to even be able to do so.he cant sit up.. and isnt even trying to crawl. he has such weak muscals that it is very hard for him to turn his head to the right there for the left side of his head has been flated.he goes to PT and OT once a week. he cant play with toyts that are made for his age due to the weakness. we are going for leg and wrist braces at the end of the month. and i have learne3d from more then one web site that there is alot of pain with EDS , that could explain why he can go from happy smiles to loud pain cries in theblink of a eye.