Jasmine “Ivanna” Espy wears many hats; she’s a journalist, documentarian, the founder of a nonprofit, The Association of Hidradenitis Suppurativa and Inflammatory Diseases, and a passionate advocate for those dealing with the chronic skin condition, hidradenitis suppurativa (HS). This summer, she’s taking her advocacy to the next level by hosting her first-ever in-person HS summit.
We had the pleasure of sitting down with Jasmine to explore the roots of her advocacy and the pivotal moments that led to the creation of the summit.
BHM: What led you to become an advocate for HS?
Jasmine Espy: I was diagnosed with HS when I was 13. So, dealing with HS at such a young age and at that time, not having many resources for treatment, physicians, knowledge surrounding HS, how it would progress, and what it would look like on my skin as a Black woman, really led me to want to be an advocate. I realized there were people like me, young or well into their journeys with HS, who also didn’t have the same resources. My advocacy came from wanting to provide the community with information that they were missing and to heal my inner child because dealing with something like HS, especially dealing with the most extreme symptoms of HS, I know all too well what isolation, low self-esteem, depression, anxiety and shame for my body feels like. I didn’t want anyone else in the community or anyone else who has HS or thinks they have HS to also deal with that as well. That’s what led me to become an advocate.
BHM: How did your personal experience with HS shape your perspective on life and health?
JE: My personal experience shaped my whole journey with HS, being an advocate and being a nonprofit founder, everything that I do for HS and my journey has shaped it. I came from a privileged space as my parents had great healthcare when I was growing up. I experienced delays and gaps, but I also had access to healthcare, which is something that can be uncommon for patients dealing with HS. In my journey, I had great healthcare, but I still was misdiagnosed.
I went to my physicians and told them about the symptoms that I was experiencing, and they told me that I had MRSA. Around the age of 14, they even told me that I had a rare blood disorder and that I was going to die potentially. Feeling the weight of those diagnoses really impacted my journey at that young age because I was already dealing with so many health issues and having so many issues interacting with my peers—dealing with bullying and feeling isolated. That deepened my feelings of insecurity, isolation, and feeling like I was disconnected from my body and community.
I was rushed into surgeries and didn’t have the best results or even find an HS specialist who could help me. All these different parallels that I experienced have really influenced my desire to provide people living with HS, their caregivers, and supporters in the community with information on what it is like to live with HS and to provide them with tips to navigate the journey.
My journey heavily influences how I show up because I believe my experience is not an anomaly. It is very common in the community. There may be some nuanced things because everyone who deals with HS has a different experience. I would like to describe HS patients as snowflakes, we can look at the geometric patterns of snowflakes and each one of those patterns are different, HS patients mirror that. We have similarities, and we have differences, and I really want to use my experience and also the experiences that I hear from other patients to help shape the work that I do and how we influence the community not only through my advocacy work as an individual living with HS but as a nonprofit that is disseminating information for people who are living with HS.
BHM: Can you tell us more about your documentary, “My Gold Lining: A Documentary on Hidradenitis Suppurativa?” What inspired you to create it, and what impact do you want it to have?
JE: This documentary is something that I created in grad school at the University of Southern California. I graduated from the Annenberg School for Communication and Journalism in 2019. For our master’s thesis, we had to create some form of media to present. I decided to do a documentary on HS for Black women. At that time, some Black women were talking about their experiences online, like on YouTube and some on Instagram, but there wasn’t a lot of information, and the information that was available online was in a very sterile manner. We were numbers in a system rather than people with faces, experiences, feelings, and perspectives. Because I have a background in multimedia journalism, I was a journalist for over a decade. I wanted to use my connections and experience in storytelling to hone in on this community and to use it to tell my story and other Black women’s stories.
One of my inspirations was “Unrest” by Jennifer Brea; she is a woman living with multiple sclerosis (MS). She created a documentary from her perspective but then brought in other community members and people experiencing MS; she was the inspiration behind the structure of my documentary. The documentary is more artistic because we used the metaphor of Kintsugi, a Japanese pottery repair technique, to explain HS’s impact. Our goal is to create this documentary for it to be an education piece for the community but also for physicians and medical students. We want to create a curriculum behind this documentary to use it as a tool for medical students to learn more about Black people’s experiences living with HS and potentially help influence how they treat HS patients moving forward. We really want to change the way physicians interact within the Black community so that we can subsequently close these diagnosis gaps and the mistreatment of Black people in the medical system.
BHM: When can people expect to see the documentary available for streaming?
JE: I want to utilize some streaming services open to independent filmmakers now. One of our goals is to really figure out how we can disseminate this in medical schools first and then we want to release it to the public. You’ll be able to see it in 2025 definitely.
Next, Jasmine discussed her upcoming summit that will be centered on making HS research and wellness accessible, digestible, and engaging.
BHM: How did the idea for the I Reclaim__ Summit come about? What motivated you to create a platform specifically for HS awareness and advocacy?
JE: To be honest, it’s actually a derivative of the documentary. We premiered the documentary at Sony Pictures Entertainment because I’m a Sony Pictures Entertainment fellow. I was an intern at Sony for a while and because of my connections, I was able to do a screening of my documentary on the lot. After that, I got all these connections, and all these people came to me just to become more of an advocate. At the time, advocating for HS was very minimal. The pandemic hit as I was talking to different foundations and seeing how I could show this to physicians and medical schools. All those conversations went to the back burner, and everyone was at a standstill.
In 2020, I had to really think about what I wanted to do to continue impacting the community. I noticed there were conferences and summits for physicians, teaching them about HS and discussing research and treatment options. I realized patients, caregivers, and supporters needed this. They could learn about HS, talk about their experiences, and learn directly from the physicians they would potentially see. So, when I recognized that gap, I knew I was clearly the person to fill the gap. I started using the connections that I had cultivated from my documentary. We went from a virtual summit to an in-person event that has experienced tremendous growth.
BHM: What topics will be covered during the I Reclaim__ Summit? Are there specific sessions or workshops that attendees can look forward to?
JE: We will have a session discussing the new research on HS and a live demonstration on how to care for HS wounds, which our community doesn’t get when they go to dermatologists, especially for pre and post-op surgeries. One of my favorite days I’m excited about is Influencer Day. This day is all about partnering with the individuals who have had amazing, strong voices on social media, especially TikTok. One of the last sessions I’m excited about is our makeover session. We’re giving away two makeovers to two patients. We’re doing a round-trip flight for these individuals, putting them up in a hotel, and giving them a complete transformation. People with HS often have issues dealing with mental health. Subsequently, our self-care journeys are impacted, and because of that, we want to provide a space to pour back into people in the community.
The I Reclaim Summit will be held June 6-8, 2024, in Detroit, MI. Click here for more information..
