My Gold Lining:

A story about a patient's ongoing fight to survive

by Jasmine IVANNA Espy

Battling Hidradenitis Suppurativa as an adolescent 

 

I was first diagnosed with Hidradenitis Suppurativa when I was 14 or 15 years old by Dr. Hamzavi at the HS clinic in Detroit, Michigan. However, I experienced my first boil at 11. I remember being excited about womanhood and thinking about all of the new experiences that would open up to me now that aunt flow paid a visit. Instead, I was met with unexplained boils. Not a boil, but boils meaning multiple in my armpits, groin, buttocks, back, stomach, underneath my breasts, on my chest, and on each side of my torso. 

 

From the moment I got my first boil to being diagnosed the HS progressed rapidly. By the time I was 15 all of my intimate spaces, and pretty much any place where skin touched skin had either a boil, open wound, scar tissue, or sinus tract. This wasn't even the worst part; the wounds stunk to high heaven no matter how much I washed. At the time, I wasn't big into holistic health so I used a lot of Bath and Body Works to try and mask the smell that was always right under my nose. I thought everyone could smell me because I definitely could. 

 

How does one even describe the smell? It kind of reeked of old garbage, rotting flesh, and metal. It was hard to spend the night at friends houses because by the morning my underwear and my shirt was soaked in puss and the odor could fill a whole room. I really feel for any adolescents or teens experiencing this disease whether it be stage I or III. No child should ever have to go through what I did. 

 

HS affected every aspect of my life including my relationships with my family, friends and peers. Because of the pain and embarrassment I was unable to focus on schoolwork or be present for everyday activities for that matter. This resulted in me being a C average student. Having HS affected my self esteem because I was also 350lbs at the time. I lacked confidence and when I looked at myself in the mirror I found nothing of beauty or value. I dreamed of the days I would get weight loss surgery or some other procedure or cure so I could have a normal life. 

 

The race for a cure 

 

I did find some sense of normalcy when I went to college. Not only did I go off to start a career, but I used it as a chance to reinvent myself. Around this time my grandmother passed from complications with diabetes. Watching her have such a miserable death made me realize I didn't want that for myself. I realized I didn't want to die due to medical mishaps and poor lifestyle choices. I also had a hunch that if I lost weight and changed my diet the HS would either become less aggressive or go into remission. 

 

Slowly but surely I began implementing changes. The first thing I did was teach myself how much to eat because my stomach was out of control. I calculated my daily caloric intake which was 5500 calories a day. I used an app called LoseIt to keep track how many calories I was eating per day. At first, I was still eating meat, dairy, sugar, and processed foods. Instead of 5500 calories of "bad food" I would only eat 2200. Each week I dropped 1 to 2 pounds, but saw no difference in the HS. 

 

It wasn't until my Sophomore year that I lost the majority of the weight and saw a change in the HS.   I convinced my parents they could save money if I moved into an apartment off of campus rather than stay in a dorm and pay for a meal plan. This is where I gained additional control over what I was eating. 

 

One night I watched a documentary my father recommended called Fat, Sick and Nearly Dead. After watching it I felt betrayed. No one told me food had such an impact on our overall health. I saw a man go from being overweight taking multiple medications a day to fit taking little to no medications. Seeing his progress confirmed the hunch I had that a lifestyle change may reduce inflammation and induce remission.

 

The documentary motivated me to slowly cut out pork, beef and processed foods. Instead of going to the local Walmart or Meijer, I went to the local farmer's market for my chicken, bread, veggies, and fruits. Cooking at home made the weight start falling off and I also noticed the HS flares were less persistent. In addition to eating a plant-based diet, I also began working out 5 to 6 days out of the week which was painful at first but eventually became a breeze. 

 

After about a year I had to move out of the apartment because my parents finances changed. I moved in with my aunt and convinced my parents to purchase a car for me. When I moved in with my aunt I started transitioning to being a vegetarian. I gave up chicken and fish which was hard because my aunt can cook her ass off. Every Sunday she cooked a mouthwatering meal, so I had to stay strong. 

 

Towards the end of my stay with my aunt I began juicing for two weeks to see what effects it would have. At one point I remember waking up one day and the wounds, tracts and scarring underneath my breasts, on my chest, back, and the side of my torso just healed up. By this time I'd lost close to 100 pounds. I was excited my hunch proved to be right for me. 

 

A new beginning

 

Around this time I also felt like a lost college student. I knew I wanted to be a radio producer and personality but had taken no classes to put me on this path. Ultimately, I decided to apply for a journalism scholarship program at Wayne State University and transfer schools. I withdrew from Western Michigan University, packed up my things, and headed back to Oak Park, Michigan to live with my parents. At this point I was no longer juicing but was still eating relatively plant-based. My HS was still dormant although not healed on my armpits, groin, buttocks, thigh, and stomach.

 

I got accepted into the journalism scholarship program which is called the Journalism Institute for Media Diversity or JIM. I moved out of my parents house into a condo they purchased with my brother to start attending school. By this time I was a vegetarian and lost 130lbs. A few months into me being at home I visited Dr. Hamzavi at the HS clinic for a follow up appointment. He told me about a clinical trial involving a Co2 laser he thought I would be a good candidate for. He was shocked and happy to see I had lost so much weight and my HS improved. 

 

The Co2 laser procedure was scary to say the least because the surgeon cut out my entire axillary region and left it close on its own. I was lucky to have my mother as my primary caregiver at this time. She woke up early before work each day to change my bandages and take a shower first week and half. Eventually I was able to do all of this on my own. It took almost a year for the wound to heal completely. 

 

A few months to a year later I got my second arm done which was easier compared to the first time because my body and I both knew what to expect. The wound healed in about six months which led me to get my stomach and thigh done too. Since the surgeries I haven't had any recurring boils or cysts where the Co2 laser surgery was performed. 

 

However, in 2017 I underwent a groin reconstruction surgery to remove the HS but it was only partially successful. At the time I was extremely desperate for relief which led me to overlook the fact that I was one of two women he performed this surgery on in his entire career. In addition to this, there was more of a chance of the boils coming back which they did. 

 

What they told me they would do is remove the HS and then pinch the skin together to prevent doing a skin graft as well. What I woke up to was the HS being removed and the left side of my labia majora was sewn to my left thigh. As a result, I am unable to wear women's underwear, pants, shorts, or pads comfortably. I am still devastated by this procedure because it brought additional anger and trauma. I wish I could say I have healed from this, but it affects my life still. 

To be an advocate or not to be an advocate, that is the question

 

After all I endured I still graduated from Wayne State University with a BA in Broadcast Journalism. My undergrad experience was completely different from my grade school years. In college I maintained a 3.0 or higher for the first time in my life and traveled across the country for various journalism conferences and fellowships. While I celebrated this huge achievement I was looking for the next big thing.

 

I spent the majority of my time still working at Wayne State while searching online for journalism fellowship and scholarship programs. I came across a fellowship with Sony Pictures Entertainment at the University of Southern California in Los Angeles for studying film criticism. After doing more research and weighing some other options I applied to the program. There was no guarantee I would receive the fellowship but I was hopeful. 

 

A month or two after I applied I found out I not only got accepted into the program but was awarded the Sony Pictures Entertainment fellowship and another scholarship to attend USC. A month before I relocated to Los Angeles I got a boil the size of a golf ball on my perineum. It disabled me for two weeks until I decided to just get it lanced. Before I got it lanced I had a fever, body aches, and I couldn't eat, drink, or barely think for that matter. The boil grew to the size of a tennis ball or bigger. 

 

When I looked back over my diet I determined my sudden increased intake of dairy might've played a huge part in this flare up. Luckily, I got the boil lanced and continued preparing to leave for LA. When I arrived in LA my HS was still flaring but not as bad as it did before I left. I got two new boils in my groin area before 2019. One of which I had to go into the doctor's office to get lanced. This was the last straw, I transitioned back to a very strict diet of no dairy or fish, but I was still eating a lot of processed food, grains, soy, and white sugar. 

 

While attending USC for film criticism, I had to determine what I would do for my master's thesis. I got the bright idea to write, produce, and direct a documentary on HS. My teacher was not on board at first because he didn't see the value in shedding light on a community through my own perspective. He felt this wasn't journalism. However, I modeled my documentary from a very talented documentary producer and health advocate named Jennifer Brea who created Unrest. Once I presented him with the facts he was more on board with the vision but still had his reservations. I respected his opinion but ultimately I paid for the degree so I was going to do what I felt God was leading me to do. 

 

At first, I was going to center the documentary on diet being the cure to HS but I quickly realized everything doesn't work for every patient, so I had to broaden my approach. I added another young woman from Maryland who is a beauty influencer on YouTube, Antonia Jannee. In addition to her HS story, I scheduled interviews with dermatologists, therapists, naturopathic physicians, and alternative healers to better understand the condition.

 

While producing the documentary I found myself wanting to quit because I felt like I wouldn't do the community any justice. I was worried about whether or not patients would be able to relate to the information being shared. However, with motivation from my family and friends I was able to complete the documentary and premiere it at Sony Pictures Entertainment and in Detroit, Michigan. 

 

The film has yet to be released for streaming because I am in the process of raising finishing funds for the documentary through the Center for Independent Documentary. The film not only premiered in Detroit, Michigan but also at Sony Pictures Entertainment. The funds will go towards professional sound mixing and mastering, motion graphics, re-editing, and color correction. When this is completed the film will be available at the top or middle of 2021. 

 

The film was only the beginning of my advocacy work. In June I organized a virtual conference for HS Awareness Week that featured dermatologists, therapists, alternative healers, and HS patients. It was an educational experience for patients and caregivers. I was able to secure funding not only from the HS Foundation, but from The Mama Au as well. We also partnered with ForHer Cosmetics, HidraWear, and The Mama Au to give away specially selected prizes for HS patients. 

 

While my HS has gotten better since I cut out sugar and other processed foods, I am still struggling with inflammation. I've invested heavily in therapy because the emotional and mental effect HS has is humongous. As I continue to move forward as a patient and advocate, my vision and intention is to create products, films, and programming addressing some of the many disparities in the community while bringing awareness. 

 

My advice to other patients 

 

Finding something outside of myself to believe in has helped me deal with the depression, anxiety, and hopelessness that comes with having this condition. I encourage patients who are struggling and battling with this condition to connect with online support groups on Facebook, follow influencers on Instagram and YouTube. Educate yourself about the disease and find a disparity in the community you want to address. Not everyone needs to start a foundation, but even if you want to simply create an event to bring patients together that has a positive effect on the community and you. It will give you a sense of purpose in the storm. We need your voice and your experience. We see you, we hear you, and we love you.  

Get Updates

Affiliated With

© 2020 by HS Connect   |  HSConnect.org@gmail.com  |  PO Box 73244 Puyallup, WA 98373  |  253.256.1579