I got my first boil in sixth grade. Because I was severely overweight – 300 pounds and prediabetic – I thought the boil was just another health concern that would come and go. I was wrong. The boils kept coming until one day I looked in the mirror and my underarms, underneath my breasts, my back, my stomach and other intimate spaces were covered in boils, sinus tracts (tunneling wounds underneath the skin) and scar tissue.
For three years I had no answers. My health declined and, at the end of each day, my shirt, underwear and bra were covered in pus and blood. My self-esteem took a nose dive into the ground as I grew lonelier and more isolated. I numbed myself emotionally as a coping mechanism.
I was in and out of doctors’ offices so much I began feeling like a science experiment. Physicians were just as flabbergasted as I was. They’d run tests and say I had a staph infection. No, it was MRSA. No, it was a rare blood disorder that was life-threatening. I began losing trust in Western medicine until my mother found a clinical trial through Henry Ford Hospital describing my symptoms.
That’s when I met Dr. Iltefat Hamzavi, a dermatologist specializing in the treatment of hidradenitis suppurativa, a chronic skin condition featuring lumps in places like the armpits or groin. Skin lesions develop as a result of inflammation and infection of sweat glands. Dr. Hamzavi diagnosed me with HS, and I began treatment almost immediately and was relieved. However, my journey to healing had just begun.
After years of taking antibiotics like Clindamycin and rifampin with little to no relief from HS, I decided to take matters into my own hands. I adopted the elimination diet where I cut out foods gradually to assess my HS triggers. I started by eliminating pork, then beef, then processed foods, then chicken, then dairy until I was a full-fledged vegan.
After a year, I noticed a reduction in inflammation. The reoccurring boils stopped and some of the sinus tracts began to heal. After two years, the sinus tracts and scarring underneath my breasts had completely disappeared, and I was 100 pounds lighter.
Because the inflammation was under control, I was now a great candidate for plastic surgery. Dr. Hamzavi and his team used a carbon dioxide laser to gradually cut the diseased tissue caused by HS out of my body. Around this time, I joined online support groups, connecting with patients to help curb my isolation and shame.
For years I’d read countless stories of misdiagnoses, medical trauma and failed treatments until one day I was fed up – with suffering and seeing thousands of other people suffering, too. So, I set out to produce and direct a documentary on hidradenitis suppurativa.
Not only did I address the condition from the clinical side, but I incorporated my story into the project. I also got to know and feature Maryland-based beauty influencer Antonia Jannee, whose journey is similar to my own. Thus, My Gold Lining: A Documentary on Hidradenitis Suppurativa was born.
Initially, I was fearful about releasing the documentary because it is a very intimate look into my reality and the experiences of patients across the world. I had to do the community justice. I longed to start a conversation and attract funding for more research and treatment.
Questions whirled around my head. What would people think of me now? Would they stop loving me? Would my dating life suffer? After hosting a screening in Los Angeles at Sony Pictures Entertainment and one at NextWave Media Lab in Detroit, attendees used words like “brave,” “beautiful” and “educational” to describe what they’d seen.
I thought my experience would be invalidated when, in fact, it was embraced with love. I would do it all over again, for the freedom and just to reread the comments and messages I’ve received from HS patients elated to see themselves and their experiences represented in film. The goal now is to organize a social impact screening tour, where the documentary is screened in select cities around the world for HS patients, their families and friends, and the general population.
As I continue to screen the film, I hope it offers healing and freedom for patients by encouraging them to tell their stories. I want patients to see that the world does care and that the only barrier to their understanding is ignorance, and the cure to ignorance is education.
For updates on My Gold Lining: A Documentary on Hidradenitis Suppurativa, follow @whoisivanna on Instagram and Ivanna Espy on Facebook.