Becoming a Hidradenitis Suppurativa (HS) Advocate Saved My Life

I was a sick kid; I was overweight, prediabetic, had metabolic syndrome, and was used to being in and out of the doctor’s office. So, when I woke up one day with a boil under my right armpit, it felt like just another medical issue. 

I was in middle school when I first experienced hidradenitis suppurativa (HS). My mom took me to my primary care physician, who said to monitor the boil, but no one, myself included, was alarmed. I don't remember how rapidly the HS progressed, but by the time I was in high school, skin lesions covered my breasts, back, sides, stomach, thighs, groin area, and armpits.

I received several rounds of misinformed medical advice and misdiagnoses. One doctor told me I needed sweat gland surgery, which we now know would have done nothing, as HS doesn’t have anything to do with the sweat glands. 

Another doctor said I had a rare blood disease and told me I had a few months to live.

My intuition told me this was a dermatological condition. I went to Harrison Ford Hospital in Detroit and met Dr. Hamzavi, a dermatologist in an HS clinic. He diagnosed me with severe HS and put me on an antibiotic clinical trial, but they didn’t ease my HS symptoms.

I still got boils, oozed puss, and smelled awful; I felt forever sick.

Living With HS

I hated being me as a child. In middle school, a boil in my armpit burst. When I raised my hand, a classmate pointed out that I had blood all over my arm. Everyone gasped. Another time, I remember having to beg a camp counselor to let me shower multiple times a day because of my smell.

I couldn’t deal with the reality of having a chronic illness and not knowing my body. Looking back, my denial impeded me from adequately caring for taking proper care of myself.

In another attempt to manage my condition, I joined a clinical trial that used a YAG laser to zap the top layer of my skin to decrease inflammation. Similar to the antibiotics, it didn’t work.

Before HS, I was an extrovert with a lot of friends. I had no concept of beauty standards. After HS, I became self-aware in an awful way; I was 5’9, 350 pounds, and dark-skinned. I was anxious to be around people. I was anxious to be around people. It seemed like society had a certain standard for bigger women—deeming them sexy or curvy—but I was not that.

Learning to Help Myself

Dr. Hamzavi urged me to look at my diet as a possible aggregate for my HS, but losing weight seemed impossible. Food was the one thing getting me through the day, the only comfort I had.

When I went to Western University in Michigan, my dad told me college was a time to become who I wanted to be. I decided I would rather die frolicking in flowers than laying sick in a hospital bed.

My dad, who has diabetes, started juicing and eating healthy; eventually, he could get off his diabetes medication. Seeing him care for himself inspired me to reexamine my diet. I stopped eating the food on campus, drove myself to the farmers’ markets for healthier options, and started exercising regularly. 

Slowly, I was experiencing fewer flares.

Then, I watched a documentary, What the Health, which discusses the relationship between food and health. I had no idea that food could contribute to disease. I slowly eliminated foods from my diet, becoming a pescetarian, a vegetarian, a vegan, and finally, a raw vegan.

Areas of my body once covered in skin lesions were healed; this was solely from changing my diet and losing weight.

Deciding to Get Surgery

I returned to Dr. Hamzavi to see if any new HS treatments were available. He told me about CO2 laser surgery, which could remove scar tissue from my left armpit and part of my arm. I was a prime candidate for the surgery; my skin had more elasticity from losing weight, I was exercising, and collagen flowed through my body. I was ready to try it.

It was supposed to take three to four months to heal from the procedure, but due to a partially open wound that required extra care, it took closer to a year.

Then I got my right arm done, which took another six months to heal, followed by my stomach and side—all successes. 

 I asked Dr. Hamzavi if we could use the CO2 laser on my groin since I had had such success in the other areas of my body. He referred me to a urologist who could perform a scalpal surgery. 

I ignored the red flags.  I wasn't dating much, and the relationships that I did have were difficult for me because of how I felt about my body. I rushed into the surgery because I wanted to feel confident dating and, eventually, having sex.  

Unlike the other surgeries, though, this one was botched and mutilated my genitals. My heart broke.

Seeking Mental Health Help

I had dealt with suicidal ideation in the past, but after this surgery, I really wanted to die. I knew that life could change and saw that first-hand when I lost all that weight, but I needed help.

Dr. Hamzavi introduced me to Erin Martinez, a social worker specializing in treating HS patients. Together, they saved my life. [Dr.] Martinez urged me to get active in the HS community and join support groups. Patient advocacy was new to me, but I was open to it, and it ended up being a huge help. 

Getting Involved in the Community

I went to graduate school and decided to create a documentary on HS. I wanted to elevate Black women's stories. Writing, producing, and editing the documentary forced me to process everything that had happened to me.

When I finished the documentary, I had screenings in Los Angeles and in my hometown, Detroit. I even spoke with the HS Foundation about screening my documentary in festivals.

The documentary, My Gold Lining, is named after Kintsugi, the Japanese art form of repairing broken pottery by mending the pieces together with gold. I used that metaphor to speak about HS. I even found a local Kintsugi master and planned to host wellness retreats for women.

Then the pandemic came, and everything came to a halt. My health declined and the stress of the pandemic caused my HS to worsen. 

In my loneliness, I started posting a lot on social media and sharing my story. There is a lot of misinformation about HS, so I created a summit to connect healthcare providers, patients, and support groups. I organized sponsors and the summit was a success. 

I registered My Gold Lining, LLC as a nonprofit and practice advocacy awareness full-time. My work focuses on creating videos to help elevate the stories of HS patients and others with chronic illnesses. 

Moving Onward

I’d love for people living with chronic diseases to know that things can get better. Hope is sometimes all we have. If I had killed myself when I was at my lowest, I wouldn’t have had the opportunity to experience all of the joy I now have in my life. Finding an outlet and giving back has kept me here. Art and advocacy work saved my life. 

I urge anyone with HS to see a medical and mental healthcare provider to help get the physical and mental symptoms and side effects of HS under control. While it may feel insurmountable to tackle HS, taking small steps toward healing can help.