Day 2: My Type of EDS
The Ehlers-Danlos syndromes are a collection of heritable connective tissue disorders affecting collagen production in the human body. There are currently 13 (or 14 depending on the source) known subtypes of EDS, and there is also a collection of similar diagnoses that nearly, but do not quite, fall into the diagnostic criteria of EDS, which are called Hypermobility Spectrum Disorders (HSD). Each subtype of EDS has been identified with at least one genetic variant, making diagnosis a matter of genetic testing. Each subtype, that is, except one- hypermobile Ehlers-Danlos syndrome. That makes diagnosis an entirely clinical endeavor. Which. You know. Should make it super easy, barely an inconvenience.
I meant- an extremely difficult, frustrating experience for everyone involved. Personally, I don't think it needs to be, but we'll get into that later in the month.
For now, take a look at the current diagnostic criteria. I say "current" because it's pretty much constantly being discussed and altered. It was most recently updated in 2017, which gave us this version. That's how recent it is. In medicine, that's no time at all. That's yesterday. It's certainly not perfect (again, we'll get into that later in the month), but it's a massive improvement on what used to exist.
So what does this mean for me?
Oh my gosh, thank you so much for asking! Kidding. But I do genuinely appreciate you reading this far. I have hEDS, but with more extensive vascular involvement than is usually seen. Part of the territory with EDS is easy bruising, but some subtypes have it rougher than others. My bruising is bad. Bad enough that the regional EDS specialist told me to get tested for vEDS (vascular Ehlers-Danlos syndrome, arguably the most dangerous kind) as soon as possible, and then my incredible cardiologist agreed.
If I walk more than about 10 minutes at a time or on an incline, I get bruises all over my shins. Blood vessels burst in my fingers and toes for seemingly no reason at all. Around the end of last year, I found myself needing to sit at the kitchen table every day, something I don't ordinarily do. Also something that shouldn't be a problem. If you're squeamish about bruises, this might be a good photo to skip. See all those bruises covering the backs of my thighs? Those are from sitting. In a chair. Just...sitting. That's not normal, not even for hEDS.
As of now, I don't have vEDS. But we still don't have answers to why I bruise the way that I do.
Other than that, I deal with typical hEDS:
dislocations, subluxations (partial/incomplete dislocations), hyperextensions
MAST cell symptoms
probably several other things I'm forgetting (thanks, brain fog!)
So there you have it! It's ever-evolving, but that's my type of EDS. As usual, please head over to The Ehlers-Danlos Society for more information! Or, you know, ask me if you wanna. I'll try to answer whatever questions I can.