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Old 09-14-2012, 09:00 AM   #1
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Join Date: Sep 2012
Location: Fort Worth, Texas, U.S.A
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Siouxy HB User
Hidradenitis Suppurativa

For years I was told I had "Cystic Acne" which was hard for me to understand because Acne never appeared on my face or neck, as others I had known with that issue. This started mildly at puberty as 1 or 2 large "pimples" on the inseam of my leg. Then I was told it was "in grown hair" given 2 weeks of antibiotics and it seemed to go away for a time period. As I got older I figured it would go away. People stop having Acne when they are in their 30's. No,... it only got worse. I now know that this is an autoimmune disease, it is inherited. Its not contagious, it's not an STD although it can appear that way.(asked for tests again which were negative) Testing I had for allergies shows no known allergy. Testing I had for hormones shows estrogen, testosterone, progesterone, androgen levels are exactly perfect not pre-menopausal...They also checked vitamin levels which were fine, and did an IgG blood test. That's when all my symptoms were confirmed. This is a sweat gland/apocrine issue. What was a few painful annoying bumps on leg or buttocks has now covered my thighs, and buttocks and is beyond painful. I've been told "try not to sweat" as this is a trigger to inflammation of these boils. My case now is extreme, as when a boil appears it stays for 6 months to 2 years. My treatment option is have Dermatologist drain them, steroid shot into affected area and take antibiotics 2 times a day for a month or more at a time. It doesn't help much but lessens the pain temporarily. They often test the fluid for staph which always comes back negative, but I am more susceptible to to Strep throat than regular people due to the fight my body is constantly waging on itself. I also recently had a cough producing phlegm and running nose. I'm not sick or having allergies. My Internal Doctor told me that is also part of my condition at this phase. My body is trying to expel what its fighting. Which is the apocrine produced internally when I sweat, or have stressful period in my life, I guess. It only takes an hour for an unaffected area to sweal to half the size of a golf ball. Cant walk when that happens, cant sit, or lay down. It's horrible. Being an otherwise healthy person who wants to be active outside of my home, which is often not possible. I'm very thankful to the few Universities who have Genetic departments studying this. My hope is that they can determine which gene "trigger" makes this happen and figure out how to switch it off.

 
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