Autoimmune disorders

[shadow_claw]

I have Adolescent Graves' disease, which is extremely uncommon. As of today, I am currently off if my medication beacuse we are prepping for RAI(radioactive Iodine) treatment. Next week, my thyroi will be ablated.

[lightbird]

/raises hand

 

This year it'll turns ten years since I was diagnosed with Atopic dermatitis when I turned 15.

 

Most of the time, it would manifest as severe eczema on my face and around the eyes, as a reaction to various food and environmental allergens - my IgE levels are through the roof at any given time; the weather (considerably worse in winter than in summer) and stress, as well as teary eyes and running nose. It's been better for the last 3 years or so to the point that I only need to moisturise regularly and treat the occasional eczema spot. It probably helped that I met a dermatologist who told me that a lengthy remission actually WAS possible and gave me guidelines for such, instead of everybody else who always said that you can only somewhat treat it and try to cope with the recidives.

 

Anyway, it wasn't fun for the most part, because I would regularly get asked about what the heck was wrong with my face or commented on how I look outright horrible/drunk/drugged/constantly crying by everybody from friends to teachers, to total strangers, not to mention the ever-present casual staring and pity. And yet it also somehow came with the "benefit" of being called shallow because I was concerned about how I look, not to mention all the itching.

 

Because when your eyes are swollen half-shut and constantly tearing, and your eyelids, cheeks and forehead are crusted in peeling flakes of dead skin with raw, irritated skin underneath, it's quite obvious that looks don't matter, right? /sarcasm

Edited June 8, 2012 by lightbird

[kittygrl]

/also raises hand.

 

I only have Hashimoto's/Hypothyroidism. i guess i got lucky with getting with my deal with an AutoImmune disorder. My mother has RA though, so it runs in my family which really does suck.

[prairiecrow]

I have Type II diabetes, which is in the process of being reclassified as an autoimmune disorder. I was diagnosed about six years ago and there are still days when I struggle with the diagnosis and the lifestyle changes it's involved.

[GeekyWitch]

Sjogrens Syndrome

[Princess Artemis]

Anyway, it wasn't fun for the most part, because I would regularly get asked about what the heck was wrong with my face or commented on how I look outright horrible/drunk/drugged/constantly crying by everybody from friends to teachers, to total strangers, not to mention the ever-present casual staring and pity. And yet it also somehow came with the "benefit" of being called shallow because I was concerned about how I look, not to mention all the itching.

That's terrible. It's perfectly understandable to be concerned with how you look when how you look seems to cause strangers to be unable to hold their tongues.

 

I wish people wouldn't stare and make rude comments, but given they do, there are very, very few people in the world who wouldn't be concerned about their appearance.

[shadow_claw]

/raises hand

 

This year it'll turns ten years since I was diagnosed with Atopic dermatitis when I turned 15.

 

Most of the time, it would manifest as severe eczema on my face and around the eyes, as a reaction to various food and environmental allergens - my IgE levels are through the roof at any given time; the weather (considerably worse in winter than in summer) and stress, as well as teary eyes and running nose. It's been better for the last 3 years or so to the point that I only need to moisturise regularly and treat the occasional eczema spot. It probably helped that I met a dermatologist who told me that a lengthy remission actually WAS possible and gave me guidelines for such, instead of everybody else who always said that you can only somewhat treat it and try to cope with the recidives.

 

Anyway, it wasn't fun for the most part, because I would regularly get asked about what the heck was wrong with my face or commented on how I look outright horrible/drunk/drugged/constantly crying by everybody from friends to teachers, to total strangers, not to mention the ever-present casual staring and pity. And yet it also somehow came with the "benefit" of being called shallow because I was concerned about how I look, not to mention all the itching.

 

Because when your eyes are swollen half-shut and constantly tearing, and your eyelids, cheeks and forehead are crusted in peeling flakes of dead skin with raw, irritated skin underneath, it's quite obvious that looks don't matter, right? /sarcasm

 

That must be terrible. I feel sorry for you. I have Graves' eye disease with my regular hyperthyroidism, and it makes my eyes bulge slightly. Because of this, my eyelids can't close all of the way, and my eyes get red and bloodshot often. I had a lot of people at my school askin me if AI was intoxicated

[Sorrowgrave]

another Hashimoto person here.

 

I hate it. this disease can kiss my

[Ripan]

I was diagnosed with coeliac disease. *Was* because when they tested for it again after 10 years it was gone, so it couldn't have been coeliac disease. But I can't blame the doctors: I was a textbook example of it, so that just leaves trying to figure out what disease displays the exact same symptoms of coeliac disease, with the same treatment for coeliac disease being effective, without it *being* coeliac disease.

[kittygrl]

another Hashimoto person here.

 

I hate it. this disease can kiss my

i know right? at least it aint painful like most of other AutoImmune disorders. it just made me short and lethargic

[Sorrowgrave]

i know right? at least it aint painful like most of other AutoImmune disorders. it just made me short and lethargic

I have a few low amount of iron in my blood, my parents say I'm the palest person they know, and their both of Northern European decent.

 

I got to 5'7 though so not that short lethargic and frazzed? hell yes

[kittygrl]

well im 4'10 consider yourself lucky. im also pale ^^ but it fits and like it. it fits with the fact i hate sunlight and im allergic to sunscreen. also ive been taking iron vitamins cuz i heal sooo slowly

[SPQR]

I've recently been diagnosed with Celiac disease. It's actually kind of a relief, since I've been feeling a million times better since I went gluten-free. Grew 1.5 cm, too, and I'm 18.

[Sorrowgrave]

I found out yesterday that my mom had them test for Lupus's genetic marker (it killed her grandma at 60 and she's pre ) I don't have it!

[darkstormrises]

I have RA and have had it five years. It's awful and being obese doesn't help either

[Linaeth]

Lupus, reporting for duty. Doctors first started suspecting lupus when my sports doctor who was treating me for a knee injury in high school took interest in my hands, which were exhibiting a weird, scaly skin condition, blue nails, and abnormally low temperatures. He suggested it might be Reynaud's Disease, but told me it was "nothing to worry about." Still, he ordered a series of arterial doplars and put me on topical steroids. Jerk didn't tell me that he was doing this because he suspected lupus. I can understand not wanting to basically give a 15-year-old girl a death sentence, but it certainly didn't help. A few years later, I wound up being rushed to the ER because I lost all blood circulation to my limbs. I had excused myself from class to go to the hospital when my skin took on a light grey/blue hue, and by the time I arrived at the hospital (within 20 minutes), my hands and feet were dark purple and had no pulse or blood pressure. So much for nothing to worry about. I almost lost all four limbs that day. They managed to restore bloodflow by immediately getting me on IV and oral nitroglycerin, but man, it was a close call. The doc there told me with that severity, it wasn't Reynaud's Disease, but more likely Reynaud's Phenomenon secondary to autoimmune. His top guess was lupus, and he started setting up appointments for me to see a vascular technician to get better doplars done, bloodwork, an EKG, and all kinds of other stuff. He also sent me to a rheumatologist, who agreed that with what I was showing it was most likely lupus, but she wanted to run some differentials, because it could also be scleroderma or Takayasu Disease. Sadly, my parents didn't really care, and stopped taking me for my appointments and tests before a diagnosis could be confirmed or treatment. They just didn't want to bother. I wasn't exactly their favorite kid, and I'd had a lot of medical issues over the years.

 

I'm 23 now, and haven't been to the doctor for this in about 5 years. I live on my own, and can't afford medical insurance. I'm really not doing well at all. I'm so dang lethargic I can barely function, and I can't go out in sunlight unless I want to be landed in bed the rest of the day. On top of that, my kidneys aren't at full functionality, my entire circulatory system's out of whack (heart dysrhythmia, low blood pressure, vasospasms), AND I have malabsorption syndrome, so I'm basically starving to death. It's not fun to be me. I always tell my friends I must be immortal, though; if none of this has killed me yet, nothing will.

[satyr76]

My sister was diagnosed with celiac disease a few months ago.

[kittygrl]

I have RA and have had it five years. It's awful and being obese doesn't help either

My mother has this, and it has taken a toll on her, but she'll do anything to put a smile on everyone else's face ^^

[Sorrowgrave]

After some more blood work the doctor I'd bee seeing,

turns out after nine months they finally got my thyroid level at normal.

And holy does this feel good!

 

 

Linaeth,

 

It sucks that the first doctor didn't tell you,

that was kinda why I posted in here after my mom told me I'd been tested for the Lupus marker and didn't have it. You really must be immortal

[darkstormrises]

My mother has this, and it has taken a toll on her, but she'll do anything to put a smile on everyone else's face ^^

Aw man I can't believe I forgot about this thread. Silly me

 

Anyhow, it does help to stay positive even when in a lot of pain. My bf helps by making me laugh a lot. And it's always a good distraction, of course.

[Switch]

My mum has one too... I can't remember what it's called though. Something to do with her Thyroid being stupid. :c She's weak a lot from it.

[TCA]

Sadly, my parents didn't really care, and stopped taking me for my appointments and tests before a diagnosis could be confirmed or treatment. They just didn't want to bother. I wasn't exactly their favorite kid, and I'd had a lot of medical issues over the years.

oh my gods ;^; that is one of the most depressing things I have ever heard of...

[darchaliath]

Wow, I really feel for all of ya'll. I myself have Crohns and JRA- juvenile rheumatoid arthritis. I just had a small episode from my crohns 2 weeks after having my second baby(shes a little over 2 months now) and my JRA lets me predict the weather really well and isn't extremely painful yet so I deal pretty well with it. I went 15 years without any problems from my crohns before the recent small flare up.

[SkylerFarrier]

I was told Fybromyalgia was an auto-immune disorder. :/ Apparently my body is attacking my nerve endings.

[Voardrem]

I have Fibromyalgia as well, but I'm not quite sure that is auto-immune. I'm also very, very anemic. I have to take tons of vitamins and other medications. I haven't had to have a blood transfusion yet, but I'm sure its coming. I also have SOMETHING wrong with my thyroid, but I still don't know what. Awaiting test results. Whatever it is might be the cause of my anemia. I sit on my bum all day and eat normally and am still underweight, so I think perhaps my thyroid is too active.