Another May – Another Ehlers Danlos Awareness Month

May is Ehlers Danlos Syndrome month. I’ve been sharing awareness about EDS since I was diagnosed. There are 13 types of EDS, some more rare than others. I have the most common type with 90% of cases have Hypermobility EDS.

You can learn a lot about the different types of EDS by visiting here. Hypermoble EDS is the only one of the 12 that doesn’t have a genetic connection. There is still ongoing research to find DNA results that are the cause of hEDS. The HEDGE study has compiled DNA on 1,000 people with hEDS. Sequencing was done at Harvard and the Broad Institute at MIT. This is the one of the leading genome centers in the world.

The EDS Society website has a list of medical devices or items that promote better health with our hypermobile issues. I have purchased only one of these the EDS Braid. It felt supportive, but it’s expensive and very hard for me to put on. Without another person to help, I couldn’t get it on. The other items are extremely expensive, and most of us don’t have any extra money, because we spend it all on our health.

If you want to try one of these, they are giving a donation from products sold to the EDS Society. They have a newsletter and conventions. Online support groups are available that can give encouragement. EDS has become much more well-known than it was when I was diagnosed. Some doctor’s aren’t convinced.

I was only diagnosed in my 50’s. I had to go behind my rheumatologist’s back to get an appointment with a Geneticist. She diagnosed me with hEDS, based on family history, party tricks, and other movements that are part of the Beighton score. Those with other types of EDS can be diagnosed with a genetic test.

I’m being referred to the new EDS and Hypermobility Center at University of Virginia. They have the following helpers: Primary care physicians, genetic counselors, PT and OT, Pain specialists, Nutritionists, and Pediatric EDS specialists.

I’ve tried PT before, which was more difficult than helpful. I am willing to try again with these new specialists. I try to not give up hope for less fatigue and pain, if it’s possible. I’ve talked many times about EDS and the co-morbidities that often come along with it. It’s not easy, and one of the main reasons that doctors always tell me that I’m a complicated case.

Everyone experiences a different set of symptoms, and they can change. I have a friend that has hEDS, and his symptoms are similar but he has some severe symptoms that I don’t have. When I’ve communicated in support groups, it’s always interesting to see what symptoms everyone is dealing with.

I’m always joyful when I can share my EDS story, or part of it. I didn’t share about how I spent years and years at the doctor. As I told them my symptoms, I was offered anti-depressives. This is a way of saying, “it’s all in your head”……another gaslighting technique that doctors sometimes use. I had to start “fighting” for myself. I didn’t give up and finally found a doctor who knew what was wrong with me.

Have you had trouble getting a doctor to listen to your concerns? If you are sick or in pain, don’t give up. Sometimes it does take a long time. Keep all your records and research to find the best doctor you can.

The main thing is to not give up on finding help.

Disclaimer: I’m not a medical expert. This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.