Help Me Fight Hidradenitis Suppurativa and Support My Family
After living for years with a painful skin disease I didn't even know had a name, I finally got officially diagnosed in 2020 with Hidradenitis Suppurativa (HS). For years, it felt like I was unclean and I hated my body.
What is Hidradenitis Suppurativa?
HS causes abscesses to form basically anywhere hair can grow, often in creases where they become extremely painful and limit mobility for days at a time. I've put myself through hell trying to work through the pain, mostly trying to hide whenever I had an active flare, hoping no one would pat me on the back if a painful abscess happened to be there. Sometimes I could only lift my arm from the elbow down. If one formed on my leg or butt, an ER trip to get it drained was almost guaranteed if it didn't resolve on its own.
The Struggle to Get Proper Care
During the pandemic, when I was getting unemployment from being furloughed, I was finally able to afford to see some doctors. Most didn't know what HS was. A lot of the time, I was just lanced and prescribed antibiotics. I eventually was prescribed Metformin to help, and that's basically the only treatment I got for a few years. The pain is still extremely ongoing.
I tried filing for disability, but they said I wasn't disabled enough not to work. The disability office had a neurologist check me over... for my autoimmune skin disease. Really felt like they were just trying to get rid of me. Compare that to my latest doctor visit where she said I had the worst case of HS she's ever seen. She took pictures and told me she'd fight insurance so I could be put on a biologic. The problem is, even if insurance covers part of the prescription, I still can't afford it.
Recent Health Scares and Mounting Costs
I had to go to the ER earlier this month because of a scare with sepsis... something I constantly worry about with the infections happening in my body. My dad passed away from cancer not long ago, and sepsis was the final push that took him. So needless to say, I'm terrified of it. The medical costs are mounting up.
My Family's Situation
My partner has been looking for work for years. When I broke my leg during a freeze here in Texas trying to take our dogs out, she literally saved my life and took care of me. She quit her job to do so and is still taking care of me, helping with the HS, helping with lancing abscesses, cleaning up messes, just being a complete beacon of positivity throughout this awful journey.
I contacted a disability lawyer, but they said I make too much money to get disability. It's nowhere near enough to take care of a family of 5.
The Reality of Living with HS
I'm doing everything I can, working as much as I'm physically able to. HS causes chronic fatigue and so many other complications. It has had such an impact on my mental health that I really didn't realize for the longest time, causing severe depression and probably contributing to a bout with alcoholism.
My doctor already wants me to get surgery to remove a cyst, and I don't know how many more procedures she's going to recommend. The treatment I need is expensive, and even with insurance, the costs are overwhelming.
What I'm Asking For
I need help with:
- Medical expenses for HS treatment, including potential biologic medications
- Surgery costs for cyst removal and other necessary procedures
- Monthly bills while I manage this chronic condition
- Emergency medical costs (like the recent sepsis scare)
Why This Matters
I hate being in this position, but I just want to take care of my family. I want to live long enough to see my kids graduate. This disease has controlled my life for too long, and with proper treatment, I hope to get some of that life back.
Thank you for taking the time to read my story. I'd be incredibly grateful for any help, no matter how small. Every contribution brings me closer to the treatment I need and helps my family stay afloat during this difficult time.
Organizer
Atticus Jackson
Organizer
Cleburne, TX