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Health Forum The place to discuss health-related issues. This board is for informal discussions only; for personal medical concerns, see your doctor.

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Post Rare Diseases /Disorders? - 01-23-2010, 01:39 PM

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?? D
-Natalie


Joey Thunder is perrffff ♥
"I'm not angel, I'm just me, but I will love you endlessley." [endlessly, the cab]
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Default 04-02-2010, 12:37 PM

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.


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Default 04-02-2010, 01:52 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


Joey Thunder is perrffff ♥
"I'm not angel, I'm just me, but I will love you endlessley." [endlessly, the cab]
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Default 04-02-2010, 01:55 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.


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Default 04-02-2010, 01:58 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.


Joey Thunder is perrffff ♥
"I'm not angel, I'm just me, but I will love you endlessley." [endlessly, the cab]

Last edited by ColorPencil : 04-02-2010 at 04:39 PM.
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Default 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!



I stare at the girl in the mirror: T-shirt, torn up jeans, no beauty queen.
But the way that you see me, you get underneath me, and all my defenses just fall away, fall away.
I am beautiful with you, even in the darkest part of me. I am beautiful with you;
Make it feel the way it's supposed to be!

You're here with me: Just show me this and I'll believe I am beautiful with you!
Halestorm
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Default 06-16-2010, 06:42 PM

I have Exomphalos Major and that has a RISK of occuring in 1 in 10,000 births. Guess who was the lucky one?
So, basically I have a Large Ventricle hernia containing my liver, a section of my spleen and loop of bowel. It occurs when the abdominal muscles fail to develop and seal these organs inside, during gestation. It took 6 operations to cover, it however, could not be fully repaired (put back inside). Many may think it's wild or untrue but unfortunately for me, it is not. I am so happy because I am going to meet some other children who have it (yay, not the only one).
This rare medical condition has since caused my respiritory disease and Scoliosis (congenital).




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