My HS Story: The Pain of Misdiagnosis
Last updated: December 2022
Developing Hidradenitis Suppurativa in the mid to early 2000s was frightening as an 11-year-old because every physician I saw had every speculation in the world but no solid diagnosis. HS appeared on my body randomly one morning in the form of a single golf ball-sized boil. Eventually, one boil migrated to other parts of my body like my breasts, back, torso, thighs, buttocks, and groin.
While my HS did spread, it is not a contagious disease. As a result, my mother and I booked a doctor's appointment for answers and relief, both of which were not immediately available. It took some time to find specialists until one day an HS clinical trial figuratively fell from the sky and into our laps. Before I dive into that part of the story, the murky waters we are about to step into are the typical experience for most HS patients across the world.
I still had no answers
HS was not my first health scare as a child. I've been in and out of the doctor's offices and poked and prodded since I was a baby. Conditions like prediabetes and metabolic syndrome plagued my body during the onset of HS. My primary care physician or PCP at the time told us everyone experiences a boil once or twice in their lives. What was odd is that I had one at my age. Following the initial visit, my PCP recommended I place a hot compress on it to bring it to a head and then nurse the wound until it healed. Except it never healed and that wasn't my only boil.
One boil after another appeared on my body and I still had no answers. I went back to my PCP and because there was no drainage and several new wounds, he was able to take a culture. He also ordered blood work as well. The culture determined the bacteria from the drainage was staph which means I could have MRSA. The blood draw revealed that I might have a rare blood disorder (I don't remember what it was or what factors determined its existence).
I was devastated. At 11 years old, I felt hopelessness I had never felt before. The constant misdiagnosis severely impacted my life. The disease progressed and eventually became unmanageable without medical intervention. The rare blood disorder, I was told, meant I might have a certain time to live, could be months, could be years. An MRSA diagnosis meant that I was now seen as "contagious" even though since having the condition no one in my household prior to that moment had developed a staph infection. Still airing on the side of caution, my mother set aside some towels and washcloths for me to use only. I felt so dirty. I thought I was the problem.
An "official" hidradenitis suppurativa diagnosis
Eventually, my PCP ran my blood work again and ruled out a blood disorder. After some research, he suggested I might have HS but wasn't sure. Subsequently, he recommended I see a surgeon at Children's Hospital to confirm. The surgeon confirmed I had HS, but no treatment plan or information about the disease was given. This is one of the main reasons I didn't consider that an "official" diagnosis. All I knew at that time is now I had a debilitating skin condition that is a mouthful to say and even harder to spell. This was about two years into developing HS. A year later my mom found an HS clinic in Detroit, Michigan at Henry Ford Hospital.
Working as an instructional designer at a health care company provided her access to newsletters from Henry Ford. She typically didn't look at the newsletter, but on this particular day, she felt a pull to look at it. Listed within it was a clinical trial for HS. My mother and I scheduled an appointment. During my first appointment, I was officially diagnosed and began treatment with Dr. Iltefat Hamzavi. Dr. Hamzavi and his term are one of the reasons I've been able to manage this disease. To this day, I wonder what my story would be if I met Dr. Hamzavi the first year I developed HS. While I'll never have that answer, I'm grateful for my diagnosis and team of physicians helping me to heal.
When you need to vent about HS, who do you turn to first?