How many of you have an illness the general public has never heard of?

Question

I suffer from a skin condition/auto-immune disorder known as hidradenitis suppurativa (http://hs-foundation.org/) . This was something I'd never heard of prior to diagnosis. It made me wonder who else is suffering from something no one's ever heard of and what his/her condition is.

Research will never be done on conditions no one has ever heard of. I figure if we gather together and learn something, it's a step in the right direction.

On that note: I'm not looking for treatments or smart-alec replies.

Answer 1

I have Antiphospholipid Antibody Syndrome (APS) and Lupus. APS is considered "rare".

Answer 2

My aunt has this illness which attacks her upper turso. She develops blisters or cysts that can be as large as peas and they drain a clear liquid that resembles tree sap. On her scalp a red area will form and if she stays in the heat not so much in sunlight the redness will spread and her hair will fall out as if she's on chemo.

She will not come out of the house for weeks on end because of the looks she gets from the general public. I tell her that it's the public that stares that are the freaks not her. Two of her children are showing symtems of it also.

You are not alone nor a freak.

As for myself I have an illness that is a direct result of the number of operations on my chest. Doctors have no name for it yet, but what is happing is that my muscles are pulling away from my ribs. I tear apart easily, over my sternum. The other day I went for an examination to see how far it has progressed and the doctor inserted his hand into my outer chest wall all the way up to his knuckles. I'm due to be operated on during the first week of Oct. I was told the operation will last 12 to 16 hours.

When my mother ask how I felt about it at my age all I could say was; See ya on the other side of the day. Kinda dumb but hey I'm no Mel Brooks.

Answer 3

omg this is cool. not that you have it, i am sorry about that, but i have it too and have felt that there is no one else in the world who has even heard of it. my experiences have all been in groin area none on armpits, but i have had to have surgery on 2 separate occasions to remove ruptured cysts that wont heal. i have had probably 16 episodes in the last few years. its hard to cope, but i hear if you take vitamins and zinc oxide, t helps. other than that i have no idea how to keep them from forming or to get rid of them i just know they are some of the most painful sons a bitches i have ever felt. i don't recommend surgery as an option until last resort because that was more painful than the HS itself. but necessary. IM me if you want karrie252003 and we can talk more about this.

Answer 4

I have heard that chinese herbal medicine in one trial have proven to be 100% effective against your condition http://www.herbchina2000.com/therapies/LFL.shtml

and to anwser your question I have vitaligo which most have not heard of, it means I have white patches all over my body. Just looks like I spilt bleach on my hands so not too bad really.

Answer 5

I have OCD,Pure-O.It is something a lot of the general public do not understand.They watch to many movies and expect it all to look like Hollywoods way of showing it.Plus not many people know of it,you feel alone a lot.

Answer 6

I don't know whether you'll have heard of it but I have Tom Jones Syndrome. It's not unusual.

Answer 7

WELL SOMEONE MENTIONED FIBROMYALGIA, IN WHICH I HAVE. ALSO HAVE CHRONIC EPSTEIN BARR SYNDROME, CHRONIC FATIGUE SYNDROM. I ORIGINALLY THOUGHT I HAD REFLEX SYMPATHETIC DYSTROPHY, BUT IT WAS CHECKED OFF THE LIST OF POSSIBILITIES.

Answer 8

I have one. But I'd rather not talk about it. I hope yours gets better though!

Answer 9

Have you heard of fibromyalgia?

Answer 10

yes, opticrectumitis, It's where the nerves in your eyes cross with the nerves in your but*, it gives you a shi**y outlook on life