Health
Related: About this forumehlers/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 wont admit this. As Dr. Heidi Collins just quoted someone in her talk at the 2014 EDNF Learning Conference this year:
If you cant connect the issues, think connective tissues! author unknown
And ironically, Im 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 Ive 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 its so rare when its really not, and its no wonder so few of us get diagnosed!
http://ohtwist.com
BlancheSplanchnik
(20,219 posts)She can't afford to go to Mayo.
Last I saw her, she's in a neck brace, leg braces, walks with a cane. She's only 50-ish. She has melt-downs on her FB page fairly frequently and wishes to suicide herself all the time.
She was so funny and smart when she was still working where I work, many years ago. It's not fair. Not fair at all.
mopinko
(70,127 posts)she is 23. she wont use it around the house, but she cannot walk for any length of time any more.
i cant believe it. i am 62, and still working hard. she is 23 and watching the future go down the drain.
BlancheSplanchnik
(20,219 posts)My heart hurts for you both. 😢💔
LeftishBrit
(41,208 posts)My MP has this condition and has given publicity to it (I dislike her politically, but this is something good that she has done!)
http://www.bbc.co.uk/news/uk-england-oxfordshire-33133119
mopinko
(70,127 posts)i wonder how she does it. very hopeful.