My introduction to womanhood was a debilitating chronic skin condition called hidradenitis suppurativa (HS) at the age of 11. Not many people know about it. I, however, have become all too familiar with HS.
A few months after my first period, a boil the size of a golf ball appeared under my right armpit out of the blue. After some pretty traumatizing misdiagnoses, doctors finally worked out that I had HS.
Life with HS has put in place a whole range of physical and emotional limitations — but I haven’t let it stop me, and neither should you. I’ve learned to manage the condition while pursuing a career as a journalist and filmmaker.
In this article, I’m going to talk about not only living with HS but thriving with it, including it as part of your story, and using it to inspire others. If you have this debilitating condition, perhaps you’ll find some solace in my story.
HS is difficult at any age. But experiencing it at such a crucial stage of development really affected my mental, physical, and emotional health.
Getting an accurate diagnosis was the first hurdle. Physicians would often diagnose me with infections like MRSA. One doctor even told me I had a rare blood disorder and was probably going to die.
The journey to knowing what was happening to my body was filled with dead ends and cliff drops.
Two years after I first noticed that life-changing armpit boil, my mother read about a clinical trial at the Henry Ford Hospital. She told me about it, and we both agreed that it’d be worth checking whether I was a good candidate.
As it turned out, I was. And, finally, I received that all-important HS diagnosis by Dr. Iltefat Hamzavi at Henry Ford’s HS clinic. With it, my life changed for the better.
Dr. Hamzavi started me on a cycle of antibiotics immediately. While the antibiotics didn’t do much for my HS, it was the beginning of a treatment plan that would help me forge a new normal for myself.
I finally had options.
HS had a tremendous impact on how I showed up in my life mentally, physically, and emotionally. Working with Dr. Hamzavi and his team enabled me to get some of this under control, and empowered me to gain control over enough elements of the disease to enjoy life, albeit in an adjusted form.
When I started going to the HS clinic, scar tissue, open wounds, tracts, and boils covered my inframammary folds, armpits, groin, buttocks, stomach, back, and side.
I started treatment through a series of clinical trials. Some were successful. Some were quite the opposite.
- The first trial used a YAG laser. They covered my HS wounds in petroleum jelly and zapped the hair follicles with the laser in the aim of reducing inflammation and promoting wound healing.
- For the second trial, I took a course of antibiotics called Rifampin and Clindamycin for 6 to 12 months.
- The third clinical trial was for CO2 laser surgery where they excised my entire right axillary region (the area where my upper arms meet my torso).
By this time, I accepted a scholarship to study journalism at Wayne State University and had lost 150 pounds (from 350 pounds).
After the first successful (but challenging) surgery from the clinical trial, doctors then repeated the excision surgery on my left axillary region. Then, the focus of treatment moved on to my stomach and thigh.
My inframammary folds and back healed without any intervention due to lifestyle changes and my weight loss.
The third and final surgery I received was a reconstruction to excise the HS from my groin area. This surgery wasn’t successful, and this process dramatically reduced my trust in the medical community.
Since then, I’ve stuck with natural remedies and keep HS in check through a healthy lifestyle.
As a young girl, I used unhealthy and unsafe coping mechanisms to escape the pain of my HS. Eventually, I matured and began pouring myself into my career and schoolwork. I went from a 2.5 grade point average to a 3.0 and higher, and earned several scholarships to study journalism in undergraduate and graduate school.
It wasn’t until I began seeing a therapist during my senior year of college that I began coming back to my body and experience.
All the while, I was contemplating my next career move and found a journalism graduate school program at the University of Southern California (USC). I applied, got accepted, and moved to South Los Angeles to earn a master’s degree in specialized journalism arts.
Despite HS’s best efforts, I haven’t looked back.
I made the bold decision to produce and direct a documentary on HS for my master’s thesis. “My Gold Lining: A Documentary on Hidradenitis Suppurativa” explores the lives of two African American women living with HS.
The film includes research and thoughts on treatment from HS specialists, dermatologists, therapists, caregivers, naturopathic physicians, and alternative healers.
After filming, editing, and marketing the film, I premiered it with Sony Pictures Entertainment at the end of last year to a sold-out audience. I’m hoping to raise finishing funds so I can align with a distributor and make the film available for streaming online.
I’ve been able to turn my pain into a superpower, healing myself and others. In June, I produced and hosted a virtual HS awareness summit and I’m planning to launch more advocacy awareness campaigns, films, and media in the future.
In June, I produced and hosted a virtual HS awareness summit. I’m also planning to launch more advocacy awareness campaigns, films, and media products in the future.
My goal is to reduce the depression and anxiety often associated with the disease by increasing representation of HS in the media.
HS is the end of one life and the start of another.
While you may feel confused and hopeless at times, you’ll still have good days. It comes down to your support team and your will to survive. (Cue a rousing rendition of “Eye of the Tiger,” air guitar in hand.)
You can have a career, tell your story, act as an advocate, and accomplish every dream you have.
Health restrictions, surgeries, and a host of other challenges may mean that it takes longer, but having a life you want is not impossible. Happiness takes time, chronic conditions or otherwise.
Take a step every day to help you accomplish your goal — even if it’s a seemingly small one. Wake up early to get stuff done. Film a vlog telling your story as a person living with HS. Give yourself enough love to get through that day.
Each step you take toward happiness and fulfillment is a point you take away from HS.
Wherever you are in your journey, have patience. Time and resolve will determine where you’ll land.
Jasmine IVANNA Espy is a journalist turned filmmaker working as an executive assistant for talent agencies and production companies within the film and television industry. As she pursues a career in entertainment, IVANNA continues to show up as an advocate for the HS community through her documentary film work, the summits, advocacy, and awareness campaigns she produces. It’s her goal to procure finishing funds to release “My Gold Lining: A Documentary on Hidradenitis Suppurativa” at the top of 2021.