My HS Story Part One: Jasmine Ivanna Espy
I was only 11-years-old when I was diagnosed with hidradenitis suppurativa. Middle school was already difficult without the addition of a chronic illness. It was difficult because I was a tall, dark-skinned Black girl encroaching upon 350lbs. I was an easy target for bullying more emotionally than physically. Considering the space I was in mentally, a boil was the last thing I needed at the time.
My first boil
I remember when I got my first boil like it was yesterday. Because I struggled with insomnia as a child, I would usually stay up until the wee hours of the night. This usually meant going to sleep between 1 and 2 o'clock in the morning and waking up at 6. I groggily swung my body to an upward seated position and as I used my core to get up, a knife-like pain shot through my left armpit. With the tips of my fingers, I lightly pressed and rubbed the lump which was hot and tender.
I was very discombobulated that morning, so my brain didn't register what was going on. I stumbled to the bathroom nursing my right arm because I couldn't put it down. I looked in the mirror to see a golf ball-sized lump protruding from my skin. I was more confused than sad or angry. I'm sure I uttered to myself, "What the hell?!" I expressed my grievances to my mother and she scheduled an appointment with my primary care physician.
One boil turned into lots of boils
When I finally saw my doctor, he told me not to worry. He said that the average person gets at least one boil in their lifetime. In my case, he said it was abnormal that I was so young. After our brief talk, he laid out instructions on how to care for the boil until it popped. Place a hot compress under the armpit for 45 minutes to an hour, he said, take the prescribed antibiotics to prevent infection, and take painkillers as needed.
The boil eventually ruptured. I believe it took almost two weeks. After that, the floodgates broke open, and the HS advanced. I wish I could break my development timeline down, but all I remember is that I went through middle school getting a new boil at least once a month. It spread from my armpits to my breasts, to my groin, to my buttocks, to my thighs, to my back, and my sides. By the time I graduated from middle school, I was considered a Hurley Stage III patient with atrophic scarring, tunneling, open wounds, chronic drainage, and a putrid smell that radiated from the areas listed above, no matter how many times or how hard I washed.
In high school, the HS continued to progress. Luckily for me, my mother worked for a healthcare corporation and would frequently receive medical newsletters from Henry Ford Hospital. On this particular day, she looked at the newsletter when she'd usually just throw it in the trash. On the newsletter was an advertisement for a clinical trial at the Henry Ford Hospital HS Clinic for a chronic skin condition called hidradenitis suppurativa. My mother recognized the described symptoms and decided to present the information to me.
Finally, some answers
When she picked me up after school she told me about the trial and asked if I would like her to set up an appointment. I agreed and went in for my first assessment. Now, I do want to back up a second and say that my primary care physician did tell me I might have HS but he didn't know for sure. He said he had seen cases like this in minors but not one of this magnitude. He said there was a procedure he would recommend to prevent the spread of the disease. He then recommended a surgeon at Children's Hospital to consult with us about taking my sweat glands out. He assured me this is the last result and he doesn't really recommend it.
However, he wanted me to get a second opinion and then come back to talk to him about it. I visited a surgeon at Children's Hospital that said he knew for sure it was hs. The sad part was that they had no solutions for treating it. I was also very skeptical because up and to this point, I had received a plethora of misdiagnoses. Some doctors told me I had a rare blood disorder and would die and others told me I had a staph infection and could contaminate others.
When I finally was able to see a dermatologist for the dermatological issue I initially thought it was, I was able to get an official diagnosis along with a treatment plan for prevention and lowering inflammation and infection. In Part Two, I will dive into my clinical trial experience and how it was the catalyst for paying attention to building total body wellness.
Check out Part 2 of this series!
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