Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
Hey everyone! :-)
My name is Olivia and I'm new here. First of all please excuse my English, I come from Germany and don't speak English very often.
I'm fifteen years old and got diagnosed with EDS Type 3 in December 2016. I have chronical pain, especially in my back since I was thirteen. My mum has EDS too and we both have got the same problem : the doctors in Germany. Many doctors and Physical Therapists have not even heard of this disease, that's why they often say that we can't be their patients.
In the moment we try to be "our own doctors" and find out, which things could help us. That is one of the reasons why I enjoiyed this Self Support Group. I am very grateful that it exists :-)
We have seen a lot of english and American videos, where people with EDS spoke about this disease. It was shown, that the knowledge is much better than in Germany! Things like Finger splints and Braces seem so clever, but our doctors have never told us of these helpful methods! For example: In 2015 at the age of 13 I got 2 discbreaks (I don't know if it's the right word, but its the german version :D). We were at 9 different doctors (thats just the number of orthopaedists) who told me, that they can't help me of that I just imagine that I have this pain in my back! (Even when the MRI shows 2 discbreaks)
It was a complicated way untill I've got my diagnosis but now it's not easier.
My mum and me have problems with our backs, knees, ellbows, necks and foots every day and know any cure or help.
Thats why we have these questions:
1. Are there any tips for things like pain, tiredness, weak muscles...?
2. Do you have a sport that helps you?
3. Do you have any tips for a "EDS-friendly work"? (Because I'm scared to choose the wrong job later which makes everything worse. In the moment I just know that I can't sit for a long time)
4. Does the doctors or Studies in England/America help you or are you also alone with EDS problems?
5. Do you know good medication for EDS?
Thank you very, very much for reading (and maybe answering)!!! :-)
I'm happy to be a member of this group now and hope you have a painless and good day
Olivia :-)
Can't answer all of your questions, I don't know the answers.
It has been my experience in the last 8 years that Doctors in America so far are NOT knowledgeable of Ehlers Danlos. My last GP after learning I had it simply told me that she "could touch her toes too", she didn't realize or bother to look at the test that she ordered that my heart was regurgitating (spitting blood backwards) on BOTH sides of the ventricles and many other issues. She was my 3rd family doctor try where I live. I'm moving and doing lots of reading up on the doctors and then making phone calls before going to them. It's really important to have a doctor that understands what this is or they can seriously hurt you not knowing.
Meds haven't helped me much except for something to sleep. Massages (deep tissue) have worked the best for me, I go 2-4 times a month. I wish it was covered in insurance here but it's not. Some states in America have medical marijuana and I have tried it in food and it worked very well but it's not legal in all states yet. DMSO is a liquid that a lot of veterinarians use, usually on horses. Sounds crazy but I've used this for about 20 years and it has helped a lot. I don't know if you can get it in Germany or not? It's made from trees, the goo they get when making paper so it's natural from what I understand. We can purchase it at health food stores or on the internet in the US.
Wish you the best!