Such a strange term. Almost impossible to pronounce. This is the name for the condition that has dictated what is physically possible for me to do for the last 16 years of my life.
Never heard of it? Neither had I until a random encounter with a good friend who has it as well. I call her my ‘pain friend’ now.
Until a few years ago this painful condition was limited to my pelvic / upper thigh area. I had my VNS device replaced in 2009 and the HS spread to my under arm area in a bad way.
The only way I have been able to control flare ups (which are horrible and debilitating) has been by shaving all areas of the body affected, using women’s anti-antiperspirant and doing as little physical labor as possible. Now that routine is no longer effective.
My internist Dr. Bannec has helped me as far as his practice allows. After a horrible experience with 1 of the 2 dermatologists in town (he just confirmed what I have and offered no real treatment plan), I’m looking for an expert. No matter the distance or cost.
Once I graduate from Indiana University in December. This will be my #1 life goal, to get this painful condition that has ruled my life for almost half of it, under control.