ehlers/danlo syndrome..
so, my medical mystery daughter is pretty sure this is the root of a lot of her problems. and she and i both have matching abnormal ana configurations that are not understood, but show an antibody against connective tissues.
she is trying to a arrange her second trip to the mayo clinic soon, tho i have been nagging the heck out of her to get a full genetic scan. she has something wrong w every system in her body. she saw a geneticist who DID NOT TEST HER (wtf? they dont want to do a gazillion dollar test?) reading this is seems he falls into the category of not knowing the less than full blown version.
she has many, many of the things mentioned in this article, including her absolutely amazing tenacity if tracking down all the bizarre things that happen in her body.
apparently she is not the only one.
We are the “frequent flyers” in the medical system, with all our myriad seemingly unrelated issues including mental health. Depression and anxiety are also rampant among us even if many won’t admit this. As Dr. Heidi Collins just quoted someone in her talk at the 2014 EDNF Learning Conference this year:
If you can’t connect the issues, think connective tissues! – author unknown
And ironically, I’m finding a lot of my fellow “zebras” (folks with EDS) are proving to be some of the most stubborn, hard-headed black-and-white thinking and pushy folks I’ve ever met! Here I thought just my family was this way all along, but no… we are those often smart, hard-charging, ambitious, perfectionist and narcissistic people who drive each other nuts! And how! So many of our “elders” (my parents, e.g.) will not admit to having a problem, only getting diagnosed by proxy to their more stricken child (someone like me) later, if ever. Toss in the misunderstanding about the incidence of it in the medical world and thinking it’s so rare when it’s really not, and it’s no wonder so few of us get diagnosed!
http://ohtwist.com
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