The New Diagnostic Criteria
Our diagnostic criteria was recently revised. Here it is. Read it for yourself.
I listened to presentations about the new diagnostic criteria at the 2017 Ehlers-Danlos Society Learning Conference in Las Vegas.
I am cool with it. It was just a big problem, the wide variety of presentations and how to diagnosis us, especially among doctors who don't see a lot of EDS. I really like Dr. Francamono and team. They do care about us and are trying to do right by us.
What matters to me as a patient, is that I manage my symptoms well. I am very severely affected, by something unknown. I do fit the new diagnostic criteria, so I can call my misunderstood disease hEDS at this point in time. However, I would not care if I could not call it hEDS and had to call it a Hypermobility Spectrum Disorder. Does it matter? There is no question that I was born very sick. What matters is that I manage my symptoms as best as can possibly be done.
What is needed is genetic cause found. There are probably a number of different genetic defects causing a presentation like Hypermobility Ehlers-Danlos Syndrome or a Hypermobility Spectrum Disorder. As those become discovered, the diagnostic criteria will change. It will become based on how people with that particular defect present.
When I was officially diagnosed at Cedars-Sinai in 2012, the genetic counselor told me the story of when the gene for Loeys-Dietz Syndrome was found. He was at work that day. It was a great story. He glowed while talking about it.
Before that, people with that LDS presentation were lumped into Marfan Syndrome. However, they have some important (and life-threatening!) different problems that people with Marfan syndrome, but until the gene was discovered, no one knew for sure that they had a different disease.
That day is coming for us. That will answer a lot of questions for us. Until then, there will be a lot of speculation. In the meantime, what matters is that I manage my symptoms as best as can possibly be done. That is why I have put this site together. Maybe you can get your hands on some injectable Vitamin C and see if it does anything for you. That was not the only thing I did to overcome Ehlers-Danlos, it just made it possible to do everything else I needed.
I also did an enormous amount of physical rehabilitation.
Then there was the problem of having been on opiates for so many years. That had to be dealt with and fixed. That was a much bigger project than I ever imagined.
Learning to be an able-bodied person and adjust to normal life problems, not just how to survive each single day of pain-disabilty-faitgue-hopeless-agony was another difficult transition.
Everyday is a day to get better.
I wish you the best.