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-   -   Rare Diseases /Disorders? (http://www.thedollpalace.com/forum/health-forum/22044-rare-diseases-disorders.html)

ColorPencil 01-23-2010 01:39 PM

Rare Diseases /Disorders?
 
Do you have or had a rare disorder or diseases or sickness?

Well, I did had one when I was little. It is really rare, and it's called Shufflers Syndrome. It's very hard to explain- but I can tell you little stories that I know and my mother told me. Dang me, I can't even find a dang article bout it. >:((

Well, she noticed I didn't crawl by the usual time we most do. I'd cry when I stood up on my feet. I rolled around to get anywere (sounds weird huh). So they took me to the doctor.

So my doctor, Dr. Demyer (idk how to spell his name lol) looked at me and told my parents that I have shufflers syndrome. It's common with babies who have brain damage. My case was very different, I didn't have brain damage at ALL. I was a perfect baby.

Okayy, this is the really odd part O.o. But anyway, he got a whole bunch of doctors and the observed me. I was on the frigin' ground and they were staring at me. All I had to do be is the normal baby, sit, play, do whatever. There were a whole bunch of them, just staring at me. They said I'd get physical therapy and grow out of it by age two.

My mom told me not really tell anybody about this one thing b4 I move on, but who gives a crap. But anyway, my mom is currently dating a heart surgeon and he was close to the doctor. My mom told the whole story about me and he thinks he was one of the doctors there! o.o

So, I got two therapists named Callie and Karen. I don't remember what Karen did to help me though. Callie helped me get on my legs and train for it. My mom told me that Karen would put Cheerios on the floor and I would try to crawl, pick them up, and eat them. :)

And they were right. I grew out of it. I finally walked. :) Today I still have the same exact letter saying that I graduated out of physical therapy. (:

What 'bout you?? :DD
-Natalie

nikkolai 04-02-2010 11:37 AM

Wow. That's a really amazing story. Knew cherrios were the best!

Well for me I was recently diagnosed with Alopecia Areata (that could change) it's basically hair loss, but in my case its just a small patch for now. It could get worse and whats weird is all my hair could fall out, even my eyelashes o.o

Though i'm most happy to say it could get better, the treatment seems to be working, but I had no idea this existed till I was diagnosed. For people who have it more severely it must be devastating, because there is no cure....I couldn't imagine losing all of my hair, I love it too much.

ColorPencil 04-02-2010 12:52 PM

Aww, I hope you feel better! That's gotta be tough stuff. If you need support, please let me know! (: I'll be happy to help.

Now my mom thinks I have a different leg problem of such. :'( . I started to get these really bad ankle and leg pains a month ago. Well I thought it was just growing pains, but I keep taking pain meds and leaving it alone, etc. My mom suggested me to wear my tennis shoes instead of my flip flops for a few days, which nothing helped at all.

Thank god I'm going to the doctor for my wellness check up next week and I can tell my doctor whats going on!!! XD

nikkolai 04-02-2010 12:55 PM

It is kinda tough but my hairs long enough that I can pull it back and nobody notices it. :)

Oh wow, ouch i'm sorry, I hope its nothing serious, good luck at the doctors.

ColorPencil 04-02-2010 12:58 PM

Thanks! My hair is short too, don't worryz. :3 Ouuch, my ankles hurt while I am typing this XC
Edit- I told my mom that my ankles hurt really bad still, and she feels bad. :|

Silent_Wolf 04-11-2010 03:33 PM

My great-uncle Johnny has a type of leukemia that is a direct result of his dependency on painkillers. He pops in and out of remission a hell of a lot; it lasts anywhere from a few days to several months. He's in remission right now. This is going to sound awfully mean, but it's his own fault he's as sick as he is now. Not to mention that right now, he can't even find things in his own house because he's constantly off his rocker on pills. -.-; I want to strangle his doctor, who knows full well that he's addicted to painkillers yet still keeps prescribing them anyway!

nikkolai 04-11-2010 04:42 PM

This has nothing to do with me personally but my friend John just beat leukemia. Thought it would be nice to share. He still goes back to hospital for check ups now and then but he's doing fantastic.

On a side note: My alopecia doesn't seem to be getting any worse, it's growing back, though i'm going to have a funky white strip of hair :D

Silent_Wolf 04-11-2010 05:13 PM

White hair can be pretty cool; a friend of mine was born with white hair. I think it's technically platinum blond. But it's more white than yellow..

That's awesome about your friend. ^_^ It's awesome that he's doing well.

Shiraku 04-12-2010 06:23 PM

Quote:

Originally Posted by Silent_Wolf (Post 904121)
My great-uncle Johnny has a type of leukemia that is a direct result of his dependency on painkillers. He pops in and out of remission a hell of a lot; it lasts anywhere from a few days to several months. He's in remission right now. This is going to sound awfully mean, but it's his own fault he's as sick as he is now. Not to mention that right now, he can't even find things in his own house because he's constantly off his rocker on pills. -.-; I want to strangle his doctor, who knows full well that he's addicted to painkillers yet still keeps prescribing them anyway!

They should strip that doctor of his license. It's as much as his fault as is your uncles. I assume your uncle is on opium/opioid or morphine?

Silent_Wolf 04-12-2010 07:32 PM

I honestly have no idea. But he's been addicted to painkillers for years, probably decades; his doctor keeps supplying him because he's getting money out of it. Believe me, if he weren't the fact that the treatments he's given my great-uncle work and work well, I'd have gone up there and raised hell by now. -_- Me and my aunt both.


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