There are 13 forms of EDS, all but one have genetic markers. The hypermobile version is the only one that is diagnosed with a single sheet of paper. This is often the one that most insurance companies don’t recognize as a condition. My genetic testing was recently denied by insurance because of the possible hypermobile diagnosis.
EDS symptoms present in many organs and can present differently throughout my life. It wasn’t until 12 years ago that I began to have more frequent complications that include shredded ligaments, ruptured ligaments and frequent dislocations.
Physicians are given a very short education on EDS in med school often being told it is so rare, that you will likely never see it in your career. EDS affects 1 on 5,000 people globally. Hypermobile is 1 in 500, classic EDS is 1 in 20,000-40,000, and vascular is 1 in 100,000-200,00. I am waiting for the genetic results as my doctors are concerned I may have the vascular form in addition to the hypermobile. So, based on these numbers, is it really that rare?
Complicated stated it best, “EDS is like an earthquake. Some days it’s a 1.2 and other days it’s a 6.7.” the intensity of pain that I experience varies most days. Some days, I am able to function just fine, while other days, I just want to stay in bed because my whole body hurts. To say that my pain level is a 10 on my worst day is not a thing, I often feel like I am on a scale of 1-20, with my pain being that of 20 or more. I have had doctors tell me, if it hurts when you do something, then don’t do that. I wish it was that simple. There are days just wearing clothes is excruciating. Laying in bed to sleep at night is often the most painful times for me. So, telling me, if it hurts, don’t do it, makes daily activities even more challenging.
One doctor in this documentary said it best, Ehlers Danlos patients need a separate textbook.” My thoughts exactly, hearing a doctor tell me there’s nothing more he can do for me was where I got the idea for the title of this blog.
I feel the limitations that insurance companies put on the time doctors can spend with a patient is part of the problem. There is currently no cure for EDS, doctors need to be better educated on this condition to be able to better serve those of us with EDS. I shouldn’t have to hear from a medical provider that they are unfamiliar with my condition or that they’ve heard of it but don’t know anything about it. More needs to be done.
MUSC had a recent breakthrough in genetic markers for hypermobile EDS earlier this year. Hypermobile EDS involves not only the connective tissue but also the immune system. You can read more about it here.
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