Hello, my name is Danasha and I am a Hidradenitis Suppurativa Warrior. I inherited this condition from both sides of my parents’ families. My mom actually has the condition. I will be 23 in September . I have been battling HS for almost twelve years. I was diagnosed at the young age of eleven.
First Flare
I can still remember the day I had my first flare and the my mom’s reaction like it was yesterday. I had what was considered stage one for the majority of my developing years. This was until my high school years. I was experiencing puberty at this time and occasionally got flares that would be considered a stage two.
This was the first of many difficult times for me. I was coming of age and would have flares that left me in a lot of pain until they drained. At this time I was being treated for HS with medications such as Spironolactone and Doxycycline. They kept the condition at bay.
Progression of HS
Beginning 2018, I started to get flares beyond stage two. It started to have severe effects on my physical and emotional health. Towards the beginning of 2019, I started to have flares in unusual places all over my body. Places such as my legs, butt, and my stomach. These flares began spiralling out of control.
Surgery
In October of 2019, my life drastically took a turn for the worse. I developed a flare on the back of my neck. This was the very first flare that had been identified as an abscess that needed surgery. The first of four major surgeries I would encounter. I would try every remedy. I thought I could manage it at home. However, I couldn’t move my head and began having spasms throughout the abscess . I had to go to the hospital. My blood sugar was in the 700’s, my white blood cell count was extremely high. I was pumped with every pain medication available including Fentanyl.
Dark Days
I ended up staying in the ICU for five days. I received wound care and pain management the entire time for the gaping hole in the back of my neck. This experience sent me into major depression episodes along with anxiety attacks and PTSD.
It took me 8–10 weeks to recover . Unfortunately, before this area healed I developed another abscess. It was on my upper left back area and caused spasms towards my spine. Once again I was back in the hospital having to have emergency surgery for the abscess. This was one of the darkest times of my life. I expressed to my mom that I didn’t want to live like this and often contemplated suicide.
It was devastating. Being twenty years old. Having to have a home health nurse come in every other day. Having your family help you with things that a normal twenty year old wouldn’t need assistance with.
New Treatments
Moving forward to 2020, I returned back to work beginning January right before the pandemic hit. I continued to have flares. At this point my dermatologist of eleven years decided to put me on Remicade IV infusions. I had started to see improvement for a little. But then began to flare at a steady stage three when I began showing symptoms of sepsis.
Once again I was forced to be out of work for three months because of my HS. In May of 2020 I was once again cleared to return to work. With the infusions I was able to live life as close to normal as possible – until December of 2020. I once again developed a flare this time on my right side where my bra line sits. I began having symptoms of sepsis again. I returned to the hospital where I was told that I would once again need another surgery.
Following this surgery I developed fluid on my lungs and had to be out of work again. I was eventually able to return and keep trying the infusions until June of 2021 . I developed another abscess in the same exact area as my previous procedure. At this point my dermatologist explained that there was nothing else she could do to help me . I had tried every medication available for HS. Hearing this broke me in so many ways. However, through my journey with HS I have been able to receive support from others who suffer from HS. I can closely relate to all of the emotions and trauma experienced.
Inspiring Others
Helping to educate, support, and inspire others is extremely important to me. It’s important for me not to be ashamed that I have this condition or allow it to dim my shine. I wear my battle scars proudly. And if I can help others do the same then I’ve already won in this battle with HS. I, more than anything, want to show others that we are more than just HS and that you are never alone. I also want to thank each and everyone who was by my side during the extremely dark time.
