Jasmine Espy talked about how she navigated her hidradenitis suppurativa (HS) diagnosis, found relief from that and other health conditions, and the importance of finding (or, in her case, creating) a community of support.
What inspired you to become a health advocate and share your HS journey with others?
My therapist encouraged me to find ways to get involved with the HS community. I attended a Hope for HS support group and found community there. I joined support groups on Facebook that connected me to patients nationwide. I asked myself, “Why not use my training as a journalist to help bring awareness to HS?” I pitched the idea to my editor, and she accepted it and was inspired by my journey.
I went to grad school and produced a documentary on HS highlighting the stories and experiences of Black women in the community. I thought it’d be powerful to create a documentary about my experience and the experience of other Black women trying to figure out life after diagnosis.
That’s when I started working on my non-profit organization, The Association for Hidradenitis Suppurativa and Inflammatory Diseases (AHSID). The HS Awareness Week Virtual Summit came after we noticed summits and conferences were geared toward educating medical professionals, but not patients and caregivers.
At first, I became a health advocate to heal myself, but that work subsequently healed others. It enabled me to heal my inner child and show people with HS that there is life after diagnosis. I hope anyone aware of my work knows that what exists in me, exists in them. They’re the hero they’ve been looking for; together, we heal each other and impact generations to come.
Can you talk about some of the challenges you faced in getting a proper diagnosis and finding effective treatments for HS, and how those experiences have informed your advocacy work?
My diagnosis journey was traumatizing. I was told I had MRSA and, later, a rare blood disorder that would kill me. I was 12 or 13 at this time. They performed tests and ruled out the rare blood disorder, but I still can’t fully articulate its impact on my psyche.
Bringing awareness to HS is about educating physicians just as much as it is about educating patients and the rest of the world. My terrible experiences navigating the healthcare system played a significant part in why I became a health advocate and expanded my work to focus on health equity, policy, and lobbying.
My goal is to create generational change so people diagnosed with HS can receive a proper diagnosis at the onset of the disease, followed by effective treatment options, mental healthcare, and communal support. Every campaign, every video, every documentary, every reel, or every article is one step closer to eradicating the misinformation and diagnosis gaps in our community.
You talk about adopting a holistic approach to managing your HS symptoms. Can you discuss some of the lifestyle changes you made and how they have helped you improve your skin health and overall well-being?
I was well over 350 lbs., pre-diabetic, with HS and many other health issues. I started to think, “What effect is the food I’m eating having on my body? How is it impacting my HS symptoms?”
At first, my journey was about overall health, then I wanted to see what would happen to my HS as a result of improving my overall quality of life. Instead of taking the bus, I’d walk. This turned into monitoring my caloric intake, and eventually I started an elimination diet of cutting out pork, beef, chicken, fish, dairy, and processed foods, one by one.
Being practically vegetarian; my father inspired me to juice. This journey led me to lose over 150 lbs., which caused my HS to go into remission. Some of my wounds were surgically removed, but some healed on their own.
I went under the knife to remove the HS in my groin area, which left me with terrible results and caused me to go into a deep depression. I experienced a devastating loss and ate everything that triggered my condition. I developed an abscess the size of a tennis ball in my groin area and could barely walk.
The vegan diet that once helped me get into remission made me sick. I adopted the autoimmune protocol diet (AIP); a strict, anti-inflammatory diet that helped get my life back. One of the most significant factors that contributed to my inflammation was stress and hormones. When I regulate the stress hormones in my body, my HS can and does heal itself.
Through your non-profit, The Association of Hidradenitis Suppurativa and Inflammatory Disease (AHSID), you aim to empower the HS and inflammatory disease communities. What advice do you have for others who may be struggling to manage their symptoms or find effective treatments, and how can they become advocates for their own health?
For those who are struggling with managing HS and finding effective treatments, I encourage you to educate yourself through non-profit organizations, support groups, and foundations like AHSID, Hidradenitis and Me, HS Heroes, Hope for HS, Help for HS, Embrace Health Nutrition, the International Association of Hidradenitis Suppurativa Network, Inc., the HS Foundation, HSConnect, and other online support groups and organizations.
Following and reaching out to these groups can help shape your journey and put you in touch with powerful resources that impact your ability to advocate for yourself both in and outside of the doctor’s office.
Is there anything else you’d like to share with our readers?
You’re not alone. More people are living with HS than you know. Our network is strong, don’t be afraid to find your community online or even create your own. Your diagnosis doesn’t mean that you aren’t deserving of life, happiness, success, or beauty; you deserve all these things and more! It is possible to be in remission. It might take time to determine what treatment will lead to that result, but it’s possible. Don’t give up!