Hello, my name is Lori and I’m a 41 year old woman with HS disease.
This is my story…
I was 19 when my symptoms started, and it took 5 years before I got my HS Diagnosis from an intern that was later confirmed by an ER physician. I’ve been disabled since March of 2002, but I did not get on disability until 2007. It took sending in pictures of my entire body and having friends and family members write letters on my behalf. I would describe the physical pain from HS as a constant throbbing with periods of burning and stabbing pains. The emotional pain is just as severe.
This disease isolates you.
Other challenges I’ve encountered living with HS are things like having a hard time sitting, standing, and lying down for long periods of time, I feel like I’m always changing positions. I have problems raising my arms above my head due to nerve damage from surgery and multiple I&D procedures. My first surgery was to remove HS diseased tissue in my breast area. The surgeon removed 7 pounds bilaterally but the operation was botched, and never fully healed.
It left me with severe nerve damage and scarring. The incisions under my breasts often rip back open. I had surgery twice in December of 2017 to try to repair some of the incisions and also to remove more HS diseased tissue from my left breast and left underarm. While the left underarm is doing well, my incision under my left breast is not healing and I’ve had MRSA and Pseudomonas infections which have required IV antibiotics.
I also have problems walking due to HS lesions in my groin and inner thigh area. Even the simplest tasks can be a tremendous challenge.
To manage my HS I see a wound care physician, an immunologist, and an internal medicine doctor. I struggle to manage my HS because I have multiple drug allergy syndrome, and I can’t take a lot of the medications that are used to treat both HS and infections. The immunologist and I are currently working together to find out which antibiotics I can take. So far, we’ve established that I can take daptomycin infusions and they work to treat my MRSA infections. I also take Spironolactone, which helps slightly.
Right now, I’m out of treatment options and the other doctors are just watching me for infection. I’m allergic to Humira, and ND-YAG laser treatments were unsuccessful. I’ve also tried diet changes without success.
There are 3 stages associated with HS Disease and I’m stage 3 in my armpit, groin, breast, and inner thigh areas. I also have stage 1 on my face and neck. If I could grant someone newly diagnosed with HS a wish for their future it would be that they are offered a successful treatment without financial burden.
If I did not have HS disease I think my life would be very different. I’d be able to continue my culinary education and open up a bed & breakfast or a cafe. I’d also be able to travel to North Carolina to see my Granddaughter and be more active in outside activities with my family.