Ehlers-Danlos Syndrome Support Group

Go to "Ask the Geneticist" web site, they have an area for finding a genetics clinic in your area for diagnosis and treatment. Also go to the National Ehrler- Danlos website they have docotors you can ask questions of.

at "Ask the Geneticist" go to Mixed Connective tissue diseases, to find EDS.

I have been dealing with this since I first fell in 1979 and my knee went out on me, 9th grade and my first week in high school. Every summer vacation I went in for surgery because I tore something and i t had to be repaired. Well im now a helathy 45 yr old woman and something like 18 surgeries later Im still dealing with this. 8 on my knee with a total knee replacement. jst had #7 on my shoulder June 1, rotator cuff repair labrium reattachement, tighening up the loosness amd scrapping the arthritis. Ive ha 2 on my elbow due to ligament detachment, and Ive had a c-4, c-5 fussion on my neck. I cant twll you how much pain I have been in the last30 years, but there is nothing I can di but to go on, I do take pain meds when the pain gets real bad. The thing that really hurts me the most is the poeple who dont know about this syndrome. Family members always saying " Cant the Doctors get it right yet" or "Surgery again...Is that all you do is have surgery?"... All I want is people to understand this is very realy and very painful and there is no cure.I live in Tampa Florida and its so hard to find Doctors who know about this and who care about you besides HMO's.. Talk about Depression..My own husband gets frustrated with me. thinking Im needing attention... I really could use something more than attention let me tell you! so all you out there who have been suffering ...I know what you are going through and maybe even more.

I know how you feel. I have hypermobility type. I have been complaining about my joints since I was like 15. Back then, the doctors called it growing pains. As soon as I quit growing, they quit saying that! They did an MRI on my shoulder and said it was fine and gave me a month-long prescription for arthritis medicine. If it's fine and healthy, why does it randomly hang there out of the socket, dr. know-it-all? current problem: twisted my ankle a few weeks back and the pain refuses to go away. everytime i take a step it hurts. i am hesitant to go to the dr for it, though, because I know they'll give me ibuprofen or maybe some vicodin, and when the medicine is gone, the problem will still be there. there are a lot of EDS people in the world going through what you are going through. please don't be sad and don't feel alone. You have to keep on going until you find the right doctor and get the right treatments.

Dr. Peter Byers UW medical center :

http://www.gs.washington.edu/facul...

He is very helpful and one of the top in his field. They can test you and find you a team to treat you. He has even answered my emails.

Move to CA!Even my mom has a medical marijuana card! I personally don't notice any benifit from marijuana so I don't use it. I do feel your pain about the athletic part. I'm a board sport girl and surf every chance I get. Sure it hurts, but so does doing dishes. Dealing with docs is tricky when you have an unseen condition they never really studied. There are a few tricks I have learned over the years. First make sure Doc knows that you have a documented condition that causes "chronic" pain, pardon the pun. Next ask Doc what they fell would give you pain relief. Talk about treatment options they suggest. Get them to ask you what works for your pain before you toss into the heap the drugs you use. This prepares them to connect the dots between drug use and pain managment and not just lable you as a "Pahrmy" (new patient trying to score drugs). Remember Doc has probably established a good sized ego, which is needed to be good at the biz, when you come in knowing more than they do and touting benifits that they don't believe in, then ask for drugs they get deffensive. Giving pain meds to a junky is risky practice. Make sure the Doc sees you as a patient, not a fill slip request. The sad truth is that you are young. Masking the pain with narcotics and Marijuana will only work for a few short years. My path is to feel the pain now, find some comfort in holistic treatments, and save the narcs for my later years after I'm wheeling around in my rascle scooter. If you establish some ground with the Doc and still get treated like a junky looking to score you need a new MD.