I was having horrible pain and going to rheumatologist who was doing nothing but tests and giving me different drugs to try every two weeks. After going to the ER with severe pain and not being treated I decided to see a pain specialist. Once seeing him within 5 minutes he thought I had EDS and referred me to a specialist in the area. Within 15 minutes of meeting the specialist and talking with him I was diagnosed with EDS!

Both my daughter and son have been diagnosed with EDS. We didn't even know there was anything wrong until my daughter was getting ready for surgery and the doctor wanted her to go to the Hematologist about her being anemic. They ran a lot of blood test but after talking to us the first time the doctor was sure she had EDS. the test confirmed it and then we tested my son and the test came back positive as well.

I'm 66 years old and was diagnosed with Ehlers-Danlos syndrome at the age of 55. I kept dislocating a standard knee prosthesis and needed to have it replaced with a hinged knee prosthesis. All my joints have been unstable since I was a pre-teen. I was called double jointed.

When I was eight years old I found myself in pain as I was laying on the ground. I had no idea why, what, or how this pain happened. All I know is the pain was so intense that all I could do was lay there starring at the sky praying that God will help me. I remember the sky was so beautiful that day...so blue it was perfect! But, I wasn't! So, I laid on the ground until the pain was not so intense. I remember making my way inside the house and resting for hours until I fell asleep. I didn't say a word to my parents only "I think I played too hard". Little did I know, this was the beginning of numerous knee dislocations. I am now, 40 years old, and I was not diagnosed with Ehlers-Danlos syndrome until I was 33. More physicians and the general public need to be more educated on this debilitating syndrome.