LDSGirl

[LDSgirl]

I'm haunted by the French language, me being one of the few people I ever meet who doesn't speak a word of it, it seems. My main forum (gifted haven, which is awesome) actually has a self-proclaimed French Mafia that took over the Intro thread and spearheaded the movement to create a new board for randomness...

Anyway, impressive bio, Lain! I wish I had gone to a school for arts, or, umm, actually learned anything vaguely creative. Or actually learned anything, to start with.

"-Psychosis
(I'm also crazy...=P)"

Do you really have/get psychosis? Is it health/med-related? I've been stressed/depressed into a pretty range of mild hallucinations, and there was the time last summer when I took a driving course and later finally realized that when I sat next to the driver and the driver darted glances in my direction, s/he was checking the right window, NOT possibly reading my mind.
"-Depression
(Pretty common in most people)"
One out of five. See above.
"-Scoliosis
(about 1 degree from a back brace. PLEASE NO!!!!!)"
I'd have a brace if they diagnosed it before I stopped growing. As it is, I'm doomed to be a hunchback forever. Lol.
"-Kinemortophobia
(Hah I'm not even joking!)"
Movement of the dead? I have phobias (ESPECIALLY bugs) but they come and go depending on how freaked out or burned out or out of it I am overall. I spent two weeks or more last school year not picking up any anything on my floor, where I throw EVERYTHING, for fear of spiders, and velour/velvet really freaks me out, too.
"-Panic Attacks
(Absolutely ridiculous)"
Mine have sublimed into this conversion reaction thing where I don't think any worrying thoughts, don't feel anxious, but do start panting and getting frozen, unable to move, and/or unable to speak. Coax, trick, or force myself into motion somehow, stop, rinse, lather, and repeat.

Dude, I don't know how you EDS people or anyone with severe medical stuff manages. I shut down pretty badly before, during, and after just a CT scan last week. I was supposed to drink some water from a styrofoam cup with a straw, but I couldn't suck on it most of the time because of the motion thing, and after that even though I hadn't eaten since the night before, I got frozen standing around in the hospital cafeteria. I moved my head twice in the time it took for my family to get their food, pay for it, and almost finish it. Finally, my little brother ran up to tell me last call, then he left while I fervently wished I could tell him to push me over. I stopped automatically corrected for certain changes in my balance (one of the few things I can do when almost-paralyzed, but still not 100% voluntary and only to maintain my position) so that I overbalanced and automatically took a step to catch myself. I got back to the table but couldn't ask for or go get food for myself, so I ended up only eating half a bagel and then having to talk to some of the doctors who know the most in the world about Loeys-Dietz, which doesn't have the advantage of years of knowledge and research like EDS but otherwise has all the advantages.

Anyway, please disregard the above rant unless you're actually inclined to read it.

[ReineDeLaSeine14]

Well i read it esp. since the disclaimer came afterward.

We EDS peeps live the same way you do :) Can you please tell us more about LDS and how it affects you?

[LDSgirl]

Hmm, now I'm thread-jacking... Heh, I guess I had that coming about living the same way, which is kinda true... but also kinda not, since everyone lives differently. I guess I'm saying that I'm impressed and that I don't think I could do it. I might keep breathing, more or less, but I'd vacate the premises. I come close to that without any physical hardship.

Well, without TOO much physical hardship.

Loeys-Dietz is a collagen disorder that was discovered in the 2000s by doctors seeing patients referred for Marfan Syndrome who didn't quite fit the diagnostic criteria and had mutations in different genes, the TGF beta receptors 1 or 2. It was also discovered among a sample of patients with an initial suggested diagnosis of EDS, but, again, it didn't quite fit the symptoms.

There's a long list of medical words describing skeletal and other symptoms, some quite severe, that apply mostly to LDS type 1 individuals. Both types of LDS can be caused by identical mutations, but other genes apparently mask some of the symptoms and determine which type and which symptoms. I haven't bothered to learn about the type 1 problems because I have type 2, which is the more mild phenotype and occurs in ~25%. We have "skin and vascular" symptoms.

Vascular symptoms = aneurysms. The most problematic one occurs at the aortic root, although arteries far from the aorta can independently develop aneurysm. It's particularly important that people get the proper diagnosis because LDS aortic ruptures occur at a lower dilation than typical for other disorders.

My father's aorta tore when I was about 2. He's had six surgeries, replacing the aortic valve and root and grafting most of the arties in his torso and down to his femoral arteries (if I'm remembering the terms correctly...) to prevent (or maybe repair?) dissections, with happen when the inner layer of the arterial wall tears and blood can then get in between the tissue and spread the dissection farther down the arteries. If the rest of the artery tears, there's internal bleeding and probable death.

My older brother was born with atrial septal defect, or ASD, a hole between two chambers of the heart. He had surgery to correct that when he was about 5. Both of my brothers later had surgery to correct their pectus excavatum, in inward-curving chestplate, which I read was caused by overgrowth of the ribs (I have it too, but more mild). Next month they're opening up their chests again and digging near the hearts to replace the aortic root, which is a safe surgery for LDS patients, especially considering we're going to the best surgeon in the world for it.

Personally, I like to tell myself I'm not affected, but I have moderate to severe scoliosis, and the aortic dilation reduces my endurance (not that I never get much exercise anyway). I seem to be racking up the risk factors for osteoporosis (which my father already has), and I'll probably have to have the aortic root replacement surgery sometime. I'm going to be on Losartan ASAP, but I'm really the lucky one in the family. The main effect the thing has on me is handicapping my dad and making me worry for my brothers' lives.

[ReineDeLaSeine14]

*MOD NOTE* I moved this these three posts as they became off topic to ZerstorenRot's introduction. They are based off her intro however which is here http://edskids.net/forum/showthread.php/hallo-152/index.html

Thanks :)

[xxBrittany]

Wow, I learned so much in 15 minutes than I think I have in 3 months!
Thanks for taking the time to explain what you go through!