I'm bothered by a fair bit of things at the moment, not just my body acting up even though that certainly is the most annoying right now as it greatly limits me more than I'd like.
But the other, non physical things then...
I'm royally pissed off with the Swedish Ehlers-Danlos Syndrome organization! They have been around for 22 years now and in all those years, they've not gotten much done at all, and they still go around spreading misinformation on their medical ID cards by writing certain issues as if they apply to everyone with Ehlers-Danlos Syndrome, instead of writing it as something that may be the case for someone living with the syndrome. By writing it the way it is, people who do not have that particular issue may be questioned whether or not he or she has Ehlers-Danlos Syndrome, even though the individual has the diagnose. The most annoying bit is that the organization has on the cards that the skin is elastic and tears more easily, instead of saying skin MAY BE elastic and tear more easily.
By writing is, individuals who have very little or no skin elasticity may be questioned, and it happens all the time anyways. Even people who are diagnosed by a geneticist may get questioned by a GP, just because. Elastic skin isn't even a formal criteria for diagnose any longer, it's just mentioned as something you may find in individuals with Ehlers-Danlos Syndrome. What we do have though, is some kind of skin involvement, just not always elastic.
My skin is only mildly elastic, it's to the point where I wasn't even diagnosed by a clinic in Denmark who only cared about the skin elasticity despite me having all the major and many minor criteria for Ehlers-Danlos Syndrome. I know I'm not the only one who wasn't diagnosed there though, and I'm far from the only one who wasn't diagnosed sooner, just because of doctors caring too much about the skin being elastic or not.
My skin is velvety smooth, mildly elastic and with some abnormal scars and striae, people who know me in person even say I'd probably fit into Classical type EDS, but truth to be told, my exact type hasn't been determined, we just know I do not have Vascular EDS. My official diagnosis is Hypermobility type, but that's like the standard you get if they don't know how to determine type. I'm guessing I may be Hypermobility with classical crossover though. Maybe one day I'll have proper answers on that, but for now, I don't really care as I do have the diagnose confirmed by two different doctors and before that, strongly suspected by another.
It just does bother me though, that the Swedish Ehlers-Danlos organization seem to not give a damn about people who have little or no skin elasticity and when you suggest improvements or changes to them, you may as well talk to the wall. I'm not a member of the organization even, I've heard too much negative experiences from members and former members, so why would I join an organization like that? They have too many people who have been on the board for the organization for too long but refuses to step down, they don't want improvement apparently. So fuck them!
A good friend and I will make our own medical ID cards instead, that has the proper information on them.
I know that people having such a card already has the diagnose and the card isn't intended as a tool to diagnose people, but the fact remains that you are questioned all the time regardless of which doctor has diagnosed you. So having information written by the old criteria, may be dangerous for individuals who don't meet that one criteria which most doctors tend to feel the most fascinated with- they always want to pull your skin to see how stretchy it is or isn't!
So yeah, royally pissed! And it's kinda hard to type at the moment so I don't know how much of this even makes sense. I'm tired and in pain... Now I shall try to catch some sleep!
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