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Anyone suffer any rare disease
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Posted 1/24/13
I have nysthagmus so my eyes constantly wiggle oddly enough I have 20/60 vision so I'm ok
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20 / M / Delaware
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Posted 1/24/13
Humanity.
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28 / M / Bay Area CA
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Posted 1/24/13
Had chronic pancreatitis for 3 years, doctors thought I was faking my pain and sickness, then finally when i was 12 it became acute(or was just finally bad enough that people had to take notice) and I had to be hospitalized. Went away for a while then came back again, doctors still think I'm faking it(their readouts or whatever didn't seem to mesh with another attack) but my parents had enough of their bullshit and said to run whatever test they had to.

I had a congenital malformation which caused it so they put a stent in it and I gave a smug ass look to the doctor who was certain I was full of shit. I'm all good now though and not really sure how rare what I had was.
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Posted 1/24/13
Nothing rare, I don't think. But I have a vitamin deficiency. If I don't take the right amount of vitamin's every day, in a short amount of time, I can become very ill.
I also have a few disorders. Such as ADHD, ADD, and Insomnia.
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65 / Maryland
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Posted 1/24/13

tommythecat wrote:

Had chronic pancreatitis for 3 years, doctors thought I was faking my pain and sickness, then finally when i was 12 it became acute(or was just finally bad enough that people had to take notice) and I had to be hospitalized. Went away for a while then came back again, doctors still think I'm faking it(their readouts or whatever didn't seem to mesh with another attack) but my parents had enough of their bullshit and said to run whatever test they had to.

I had a congenital malformation which caused it so they put a stent in it and I gave a smug ass look to the doctor who was certain I was full of shit. I'm all good now though and not really sure how rare what I had was.


I had chronic pancreatits for 8 years. I finally had my pancreas removed at the University of Minnesota in a procedure where they remove the pancreas, grind it up to get the islet cells and then reinsert them through the portal vein into the the liver. It totally removed the pain, and putting your own islet cells in means you have a chance of avoiding diabetes. Using your own islet cells avoids any autoimmune rejection from the transplant. Do an internet search for University of Minnesota and chronic pancreatitis
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31 / M / Vancouver BC
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Posted 1/24/13

I have what this guy has:
http://youtu.be/szk2xYIVKrQ
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25 / M / Washington, USA
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Posted 1/24/13

justanotherguy_2005 wrote:

I have ulcerative colitis and I guess it affects .5-24.5/100,000 people worldwide. I am among only about 15% of those affected by it in severity as well.


Hey bowel buddy.

I got Crohn's Disease, which is like your UC, but a bit more widespread in the GI tract and can also have some other systemic immune issues. data's not good, but the CDC says data puts it between .1-16/100000, so .0001% to .016%. I'm not totally convinced they are separate diseases, they're pretty much the exact same just a matter of where and how severe.
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Posted 1/24/13 , edited 1/24/13

-Vega- wrote:

It's not a disorder, but I have a extremely rare personality type. I am an INFJ according to the Myers-Briggs test. Only one percent of the worlds population have my personality. Among the male population the percentage is even lower. I have never come across anybody like me and you others will probably never will have as well.


You do realize the theories that test was based on are form the 20's and the test was developed in 1943, so I wouldn't consider it very accurate or even scientifically sound. I'm not knocking you, I'm just saying that' it's an outdated and antiquated test...
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23 / F / philly
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Posted 1/24/13

srslybro wrote:

I have Anaphylaxis. It's really lame actually, but still, only 2% of the world has it.
It sounds super serious, but really, it's just that if I eat a cashew ima swell up and explode or some shit idk.
Basically just a really bad allergic reaction.
Ugh.
Why couldn't I have something cool.


anaphylaxis to everything?!
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M / N.C.
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Posted 1/24/13
I have a serious case of the Funk. No matter how hard I try I'm just ready to get down with the get down. In all seriousness though my sister has Lupus and my father was a paranoid schizophrenic , so I sympathize with anyone who is struggling. Be strong and best of luck to you all.
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98 / M
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Posted 3/11/13
I got epilipsy, and fucking LOVE IT, I cannot drive and I have them several times a year, I LOVE IT!!! its so fun having them!!
Posted 3/11/13 , edited 3/11/13

Godoka1 wrote:

I got epilipsy, and fucking LOVE IT, I cannot drive and I have them several times a year, I LOVE IT!!! its so fun having them!!


Man that's rough. I've seen someone have a seizure one time in my life. It was in a psychology class and all of sudden we all just heard this loud, blood curling scream. We thought someone was joking around and trying to mess with the class. But I looked down below me a couple rows and it looked like he was being electrocuted. I definitely feel for people who have to deal with this.
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98 / M
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Posted 3/11/13

chase6565 wrote:


Godoka1 wrote:

I got epilipsy, and fucking LOVE IT, I cannot drive and I have them several times a year, I LOVE IT!!! its so fun having them!!


Man that's rough. I've seen someone have a seizure one time in my life. It was in a psychology class and all of sudden we all just heard this loud, blood curling scream. We thought someone was joking around and trying to mess with the class. But I looked down below me a couple rows and it looked like he was being electrocuted. I definitely feel for people who have to deal with this.


I wouldn't go back to school if I had it there I had one in 2nd grade but that doesn't really matter at that age.
Most of them were At home since I stay at home most of the time and my parents saw like 4 of them lol
Oh and I went to the hospital and had another one there as well

I can only wonde why I want to blow my brains out?
Posted 3/11/13 , edited 3/11/13

Godoka1 wrote:


chase6565 wrote:


Godoka1 wrote:

I got epilipsy, and fucking LOVE IT, I cannot drive and I have them several times a year, I LOVE IT!!! its so fun having them!!


Man that's rough. I've seen someone have a seizure one time in my life. It was in a psychology class and all of sudden we all just heard this loud, blood curling scream. We thought someone was joking around and trying to mess with the class. But I looked down below me a couple rows and it looked like he was being electrocuted. I definitely feel for people who have to deal with this.


I wouldn't go back to school if I had it there I had one in 2nd grade but that doesn't really matter at that age.
Most of them were At home since I stay at home most of the time and my parents saw like 4 of them lol
Oh and I went to the hospital and had another one there as well

I can only wonde why I want to blow my brains out?


I know, I felt so bad for the guy. Not that he should feel embarrassed or anything but just knowing he probably did feel that way I felt bad. Like you said, if it would've happened to me (it was terrible too for him because in that psychology class there were hundreds of people) I wouldn't have wanted to come back. I hope he did though because he should not feel bad about it at all. It truly was frightening for me to witness it so I can only imagine how much fear goes through people that actually have them. Is it true it feels like an electric shock going through your body or something? if you don't mind me asking?

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98 / M
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Posted 3/11/13 , edited 3/11/13

chase6565 wrote:


Godoka1 wrote:


chase6565 wrote:


Godoka1 wrote:

I got epilipsy, and fucking LOVE IT, I cannot drive and I have them several times a year, I LOVE IT!!! its so fun having them!!


Man that's rough. I've seen someone have a seizure one time in my life. It was in a psychology class and all of sudden we all just heard this loud, blood curling scream. We thought someone was joking around and trying to mess with the class. But I looked down below me a couple rows and it looked like he was being electrocuted. I definitely feel for people who have to deal with this.


I wouldn't go back to school if I had it there I had one in 2nd grade but that doesn't really matter at that age.
Most of them were At home since I stay at home most of the time and my parents saw like 4 of them lol
Oh and I went to the hospital and had another one there as well

I can only wonde why I want to blow my brains out?


I know, I felt so bad for the guy. Not that he should feel embarrassed or anything but just knowing he probably did feel that way I felt bad. Like you said, if it would've happened to me (it was terrible too for him because in that psychology class there were hundreds of people) I wouldn't have wanted to come back. I hope he did though because he should not feel bad about it at all. It truly was frightening for me to witness it so I can only imagine how much fear goes through people that actually have them. Is it true it feels like an electric shock going through your body or something? if you don't mind me asking?


If he did go back he is my fucking hero and has the biggest balls especially if there are a hundred or so people.


And no? I just pass out and feel like shit when i wake up and can barley move my body since all the muscles tence up or some bullshit.

And I don't feel pain well one time I did because I had one AT WORK INFRONT OF OTHER PEOPLE
And fell on a concrete floor destroyed my mouth well it hurt like hell for days and burned when I ate stuff
So that was the worst one.
Well I had one in like 6th grade outside on ass fault and scraped my hands pretty bad but no where near as bad as the work one
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