Unlike other illnesses, there’s no test you can take to show whether you have Ehlers Danlos. It requires a clinical diagnosis, the symptoms vary from person-to-person, and there are 14 different types. There’s often a trifecta of comorbidities, which is related to allergy & immunology, gastroenterology, and autonomic symptoms, but they don’t all have to be present: Some people are just extremely hyper-mobile; some have pain and some don’t; some have chronic fatigue and some don’t; some have the comorbidities, and others don’t.
If your doctor is inexperienced in seeing the entire clinical picture, EDS can be hard to recognize. In other words, my 13 year diagnostic odyssey was not uncommon.
In that span of time, I visited several doctors, but it was a dietitian who was finally able to bring my multi-systemic symptoms under the same umbrella. She suspected I might have Marfan Syndrome (another connective tissue syndrome) and referred me to a connective tissue genetics clinic, where I got my answer.
For a few years, I felt like the diagnosis was all I needed—I didn’t really look into management options or support groups. Then, I started to become even more symptomatic. I developed a liver infection, which triggered my POTS (postural orthostatic tachycardia syndrome), and I ended up in a wheelchair with a very fast heart rate and very low blood pressure.
I went from I’ve got my diagnosis, and I’m not doing anything about it to I need to know more.