My name is Karen, I suffer daily from Hidradenitis Suppurativa (HS) Hurley Stage 3
I have suffered from HS since my preteens. Doctors cut, pinched and drained me. They put cortisone injections in my groin, and nothing worked. I’ve had over 42 surgeries in my groin and bottom, and that’s only the surgeries I have paperwork for. In January 2016, I had another surgery in my right groin, attached to tubes and wound Vac and visiting nurse. My surgeon said I had no skin left, so he did a skin graft with urinary bladder matrix. In 2017, I was admitted again for the opposite side and another skin graft, but this time it was larger and much deeper, closer to bones and nerves. I continue to get lesions on this horrible roller coaster and ask God to just make it stop. I can’t sit for long periods, take comfortable plane rides or walk long distances, and I’m in pain every day, but I’m ALIVE. I believe a positive attitude is an essential part of healing.
ILL NEVER STOP SEARCHING FOR A CURE
With very little knowledge and research about this disease, people will continue to suffer and die. Please help individuals with this dreadful disease by helping others gain knowledge, initiate research and spread awareness.
I FOUND PEACE
My love for photography and art started many years ago after one of my surgeries when all I could do is sit and heal. It takes me to another place and allows me to find myself again, the me I lost. I feel like the whole world is going on around me, without me. This is good therapy for me and it takes my mind off the pain and depression.
HELP US FIND A CURE
Mrs.Karen BarillVOTE ON FACEBOOK
“RareArtist.org (est. 2010) is an online gallery dedicated to artists affected by a rare disease. RareArtist.org creates a permanent, free, virtual space where “rare artists” can express themselves and submit their work for public viewing.”
Learn more: RareArtist.org
Tags: Art Rare Disease