re: Rare but Scary Medical Conditions

GOUT @ 40yrs old. Even after getting healthy and dropping weight, you still have it. Brown liquor and crawfish no more.

Guillen-Barre (sp?). Read a survivors account of it. Horrifying.

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AIDS

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Somehow they have gotten that one under control. Wish they could do that for ALS and Cancer.

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Self-injurious behavior (e.g., lip biting, finger chewing, head banging.) The way this was described is that they have to strap patients to their wheelchairs because they were causing so much self harm.

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Witnessed this with an autistic kid at my son's school last week. I had to check in my son after a dentist visit and a lady was bear-hugging her kid (I assume it was her kid ) from behind. He was jumping up and down and screaming his head off. He would stop jumping every few seconds and start biting at his hands and arms, then would start hitting himself in the head and face. The whole time mom is trying to soothe him and hold his hands down so he couldn't hurt himself.

While we were waiting in line to get my son signed in, one of the firefighters that volunteers to help out with the Special Education Department there brought this rolling chair/cot contraption woth tons of straps across it. They sat this kid in it,strapped his arms and legs down, laid the entire thing back like a bed and put four more straps across the kid's body. I was kinda taken aback by how they did the boy, but I know it is for his own self-preservation.

After all the commotion died down, the mom turned to us few people in line and apologized. I told her there was no need for an apology. But I feel for that woman. It is hard enough just being a parent. I cannot imagine the things she has to go through every day. You could see on her face that she is being worn down by her situation, but you could also hear the love and motherly instinct she had while she was dealing with her child. I feel for her and anyone in that situation.

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TTP stands for Thrombotic Thrombocytopenic Purpura. It is a rare, life-threatening blood disorder characterized by:
Low platelet count (thrombocytopenia)
Small blood clots (microangiopathic hemolytic anemia)
Organ damage, such as kidney failure, neurological problems, and skin lesions)
TTP is caused by a deficiency of the ADAMTS13 enzyme, which leads to the formation of abnormal blood clots that damage small blood vessels. It can be an acquired condition or present at birth (congenital). Treatment typically involves plasmapheresis, which removes the harmful antibodies from the blood. Without treatment, TTP can be fatal.

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My wife has this. 9 people out of 1 million get it.

I don't know why, but I am going to torture myself reading about all of these. I know I shouldn't, but I won't be able not to. So thanks a lot jerk.

Blindness.

Honestly if you think about it, being blind is quite rare but the prospect terrifies me. So much so that one time a girlfriend poked me in the eyes and I stopped seeing her after that.

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This disease affects the thalamus’ ability to regulate sleep, and when that happens, sleep is impossible, even drug induced.

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Honestly, this would be a Top 5 worst ways to go. I wonder how many commit suicide rather than living without sleep for an entire year before they die. I imagine quite a few opt out after 3-5 months straight with no sleep.

Good buddy of mine just got hit with the Miller-Fisher variant of Guillain Barre disease. Your immune system attacks your nervous system. Lost his balance, blurred vision, slurred speech. Seemed like maybe a stroke but it just got worse to where he was basically fully paralyzed. Required some plasma transfusions to improve his condition and now he is expected to make a full recovery. It was triggered from a GI infection he had a couple weeks before. Just random as hell.

ALS