Hidradenitis Suppurativa USA



Joined May 2 2012
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35 years old
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Hidradenitis Suppurativa USA

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About Me

This is a picture of me before my hardcore HS.  I would have one or two small sores under my arms, but nothing really painful.  I was 17.  In my early 20s I went to a holistic healing lady to take care of these mysterious little sores and within a month of taking all the supplements she gave me, my HS exploded!  I couldn't walk very well, so I had to hobble everywhere.  I couldn't move my upper arms due to the pain.  And, oh my god, the showers!  I showered as little as humanly possible because it hurt so much!  I really just stopped leaving the house altogether.  I was lucky I had my parents to live with.  They supported me and took care of me.  It was horrible.  I wanted to die.  My brother took his life when I was 11 years old and I saw my parents live through that, so I couldn't do that to them.  Guilt was the only reason I didn't take my life during that time.  My mind was starting to do really weird things - I was having really strange thoughts.  It was simply the worst decade I will ever have in my life.  

It must have been about May of 2012 when my mom found this site and an invitation to a clinical trial in Troy, MI, about 2 and a half hours north of us.  I had already given up on looking for treatment years before, but Momma was still determined.  The clinical trial was given no money for advertisement, so Dianna, the clinical trial coordinator for a dermatology practice in Troy, was trying to get the word out.  It's obvious that I was on placebo for the first three months in the trial.  The patients were then re-randomized.  I got my new syringes and within a week my pain number had gone from an average of 8 to an average of three!  It was the next week, or maybe the week after that, that I restarted my life.  It has been not quite a year since I started getting the real Humira and my life is unrecognizable.  I'm in college and I have a personal trainer to try to lose the 100 lbs. I put on during my illness.  I'm not in remission.  I usually still have about 5 in my groin area at any given time, but they rarely give me any pain.  My average pain is never above a 2, and that's at it's absolute worst.  If you can find a way to take part in a Humira study, absolutely do it.    

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