Hello, my name is Jessica, and I’m a 30 year old woman living with HS disease. The pain from it is unbearable at times; it feels like my skin is ripping, burning, stabbing and throbbing. The pressure is awful, not to mention the constant itch you cannot scratch.
This is my story…
I was 20 when the symptoms started, and it took 6 years to be properly diagnosed by a General Surgeon. I’m in stage 3 now, which means I have many open wounds in my armpits and groin. It keeps me from enjoying so much with my children. It’s embarrassing; I stink and it ruins my clothes! It’s caused me to have too many anxiety attacks and bouts of depression to count.
Two important rules I follow to help manage my HS are keeping the areas very clean and uncovered. I also use probiotics, vitamins, ensure, essential oils and pain meds to help control the condition since the surgeries I’ve had [there have been two] were unsuccessful.
I did see a dermatologist for a little while, but felt my options were very limited. Since my surgery failed, I’ve been going to wound care and am also being referred to a plastic surgeon who will probably offer skin grafts. If I were in a legal state I’d try cannabis oil first before another surgery, but since I don’t have that option I just keep trying to do what the docs think will help.
I’ve never been able to keep a steady job, but luckily I am able to get social security and disability. It lets me try to enjoy being home with my kids. Along with the HS disease, I also had a pilonidal cyst surgery last year that needed a wound VAC for a month, which is part of HS from what I know. I was also born with a nerve deterioration disease called Cmt [Charcot–Marie–Tooth disease]. I still do photography on the side and it’s hard to keep appointments sometimes, but I try to fight through the pain to keep my passion alive!
If I could grant a person newly diagnosed with HS a wish for their future, it would be that they don’t suffer like I do and that a cure is found. My life would be so much easier if I didn’t have HS holding me back. Simple things like walking and wearing clothes wouldn’t feel like a chore.