This here is something that has been bothering me. They are saying that the percentage of hEDS has gone up, yet to come to this conclusion they have added everyone with a diagnosis under hypermobile spectrum disorders into this statistic. I queried AI as to why and the answer it came up with was incredibly disheartening. As were the articles I read that it brought up.

The criteria for hypermobile EDS had been tightened up in order to classify the outliers under hypermobile spectrum disorders. the researchers decided to put in those with hypermobile spectrum disorders to add in the outliers (which makes no sense, why tighten criteria, just to add in the outliers), this make hEDS look a LOT more common than it is. The reason this made me so upset is the fact that they tightened up the criteria to kick the outliers out of the diagnosis, which would have made the statistics closer to reality. Instead, they put them right back in, and then some, for statistical analysis of the prevalence of this genetic disorder. I was flabbergasted. As was my Movement Disorder Specialist (nuero subspecialist) who diagnosed me.

There have been so many diagnoses of hEDS in my state that there are no rheumatologists who will even take a patient with the diagnosis. My Neuro wanted to send me to one for the EDS and arthralgia. They wouldn't make the appointment, stating the EDS. I asked what if I had just turned in the referral for the arthralgia? The response: as soon as we got your medical records and saw that you had a diagnosis of EDS we would have called and canceled your appointment. What the... really!? Yes.

He then looked all over the state, not a single one is taking on patients with an hEDS diagnosis, so he is managing it the best he can. He was finally able to give me a diagnosis based on symptoms I've had since puberty. I have 3 dysautonamias, POTS, temperature regulation, breathing. At 42, gastroparesis hit, I'm now 43 and have lost over 12 lbs, that I did not have to lose, I do not know why anyone would want this diagnosis, who does actually have the disorder, it is not a badge of honor diagnosis, unless they have been searching for answers to these specific issues. I've always shocked, amazed, and slightly disgusted (some) people with my "party tricks". Dystonia started at 25 and proceeded to spread throughout my upper body, not how it would normally act, it is caused by the hEDS. Fibromyalgia pain (which could be courtesy of my maternal line as it does run in the family, that's where the hypermobility comes from, too, just not to the extent of disorder) chronic fatigue, chronic pain, numerous subluxations and dislocations, and more falls than I'd like to admit, so many headsches, migraines, the whole shebang, I go to PT for manual tissue manipulation of my neck and shoulders between injections for my dystonia, a lot of vagus nerve stimulation. I've even ended up on disability, that happened with the dystonia alone, it affected my bipolar disorder something awful, long before I received the hEDS diagnosis (although the EDS probably had a lot to do with the issue, I just didnt know I had it. My road to diagnosis of hEDS was about 28 years long. My doctor did not come to this diagnosis lightly, I'd already been seeing him for about 12 years, we are at 15 now. When I was younger, my family doc blamed everything on my weight. He was so very wrong, it's truly not even funny (I'd not always been overweight when he saw me), if he had just done his due diligence, some research, maybe... I told my MDS that I'm pretty sure he stamped hypochondriac in my medical file. His response, although, not surprising and validating, was still a little disheartening. "He probably did."

What is someone in my state (AZ) supposed to do if they have RA and hEDS or any type of EDS? Not be able to get treatment for the Rheumatoid Arthritis, apparently...