From Patient to Advocate: How Jasmine Espy is Empowering HS Patients and Caregivers to Reclaim Their Lives

We’re shining the Spotlight on Jasmine Espy, the Founder and CEO of The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID). Ms. Espy is a dynamic storyteller, nonprofit leader, and health advocate, reshaping the narrative of owning one’s story to build strategic partnerships, drive generational impact, and inspire systemic change. Ms. Espy is interviewed by Chinenye Onejeme, a fourth-year medical student at The University of Texas Medical Branch and a VisualDx Student Advisory Board member.

How would you describe your journey, and what led you to start a nonprofit organization?

Ms. Epsy: I love this question because, interestingly enough, my journey into nonprofit work began with journalism. I earned both a bachelor’s and a master’s degree in journalism, and I always say that nonprofit work did not find me — I found it. Over time, it became clear that this was my true calling, and I simply had to surrender to it.

My journey with hidradenitis suppurativa (HS) began when I was 13, and by the 9th grade, I was officially diagnosed. I went from stage 1 to stage 3 of the condition.

This transformation was not just physical — it was emotional. I went from being a bubbly, outgoing person to someone who was reclusive, reserved, and deeply self-conscious.

These changes were compounded by early experiences of bullying, and I developed coping mechanisms to protect myself.

This struggle shaped who I am today and fuels the work I do. When I was diagnosed, I sought treatment at a clinic in Detroit, where I participated in clinical trials. It was there that my physician asked me how I was really doing. After learning about the mental health impact of HS, I realized that I had been hiding behind a mask for years. I had been silently battling mental health challenges like suicidal ideation, dissociation, and extreme anxiety — struggles that intensified my experience with HS.

After years of therapy and treatment, I was able to connect with others in the HS community. However, there was a noticeable gap. There was no dedicated support platform for HS patients. At that time, I was working as a journalist and pitched an opinion piece about how veganism helped me manage my HS symptoms. That article did not go viral, but the responses from physicians and patients were very affirming. I realized I could raise awareness through journalism.

I later pursued a master’s degree at the University of Southern California, where I created a documentary about Black women living with HS. As a Black woman who lived with the condition, I felt uniquely positioned to tell this story. This documentary became my Master’s thesis, and through it, I began hosting screenings and reflecting on my advocacy work.

When the pandemic hit in 2020, I took a step back to reevaluate my path. During this time, I remembered attending an HS research symposium and realized there was no summit for patients and caregivers; only for researchers and physicians.

This recognition pushed me to organize the first-ever, patient-centered HS summit, which we hosted virtually. The summit raised $7,000 and led to many new connections.

In 2021, I was introduced to a pharmaceutical company that expressed interest in supporting my work but explained that they only funded nonprofits. After reflecting on this, I founded My Gold Lining Inc. in Detroit as a 501(c)(3) nonprofit organization. However, after further reflection and guidance from mentors, I realized the name “My Gold Lining” did not truly reflect the work I was doing for the HS community. In 2022, I renamed the organization The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID), to better align with the community I aim to serve.

The rebranding and refreshed mission opened up new opportunities. By 2023, we had our first official funder, and our summit continued to grow. That year, our work with Norvatis expanded from small collaborations to officially sponsoring the nonprofit. In 2024, we held a hybrid summit that brought together over 100 people in Detroit and many more online. It was our most successful summit yet, with contributions from physicians, patients, and small businesses.

AHSID now focuses on empowering patients and caregivers to reclaim their lives — helping them see themselves beyond their disease.

Our current initiatives include a Diversity, Equity, and Inclusion community mapping project in Detroit to measure healthcare disparities faced by HS patients and a re-cutting of my documentary, which we plan to release soon. This nonprofit journey is constantly evolving, and we are working on several exciting projects as we grow.

Can you speak to the impact of some success stories that have resulted from your nonprofit organization?

Ms. Epsy: We have received an overwhelming amount of positive feedback from our summits and social media platforms, especially in raising awareness about HS. Many of our community members have shared how our work has helped them move past feelings of shame, start conversations with their families about the condition, and seek the professional help they have long needed.

Before joining our community, many patients felt isolated, often because their friends and family did not understand HS. At our summits, we regularly hear from participants who express feeling truly seen for the first time. They also form lifelong connections with others who are going through similar experiences, helping them feel less alone in their journey.

One of the most impactful projects has been our Diversity, Equity, and Inclusion initiative, which focuses on Black HS patients and their unique challenges in accessing care. The feedback from this project has been incredibly positive, with people expressing how meaningful it is that we are spotlighting the healthcare barriers faced by the Black community.

In addition, we have developed educational materials like the Hidradenitis Suppurativa Basics booklet and a patient brochure to combat misinformation and provide valuable resources for managing the condition. These resources have been well-received, offering clear, accessible information for both patients and healthcare professionals.

Our I Reclaim summit and online platform have also been essential in giving patients a voice. The feedback we have received has been nothing short of incredible. Volunteers who have joined our organization have shared how their understanding of HS has been transformed, deepening their empathy for the challenges patients face.

What are some common misconceptions about HS or inflammatory diseases that you believe healthcare professionals and the public should better understand?

Ms. Epsy: As a young person, I often felt like a burden, dealing with bullying and the physical pain of HS. It had a significant toll on my mental health. I really wish someone had been a support system for me outside of my parents, who did not fully understand what I was going through. I needed help with my mental health struggles, including isolation, shame, and dissociation. I often felt like I was walking on eggshells when talking to friends about my condition, and their reactions only made me feel more isolated.

One misconception I want people to understand is that HS is not just about the physical symptoms; it profoundly impacts mental health.

Early intervention for treatment could have significantly altered my path, so I believe in the importance of addressing this early on. Lastly, I want people to understand the importance of community. For years, I had no one to turn to who truly understood what I was dealing with, and it made everything harder. The isolation I felt could have been alleviated if I had a community of people who looked like me and understood my struggles.

Do you have any advice for someone who has been newly diagnosed with HS?

Ms. Epsy: First, I would tell them that they are doing the best they can with what they have. Take it one day at a time. When we think about the future, the weight of finding a cure can be overwhelming. Instead, focus on taking that first step to find help. That is often the hardest part, but once you take it, everything else becomes clearer.

My dad always says, “God bless the steps,” and I truly believe that as you start your journey, the rest will reveal itself.

Second, I would advise connecting with patient organizations or influencers who are sharing their stories. There are several HS-focused organizations in the US and internationally; getting involved can help you find treatments and, more importantly, reclaim your life.

Finally, I would remind them that they are beautiful regardless of their condition. I wish I could have told my younger self that. I want others to know that they are loved, supported, and that healing is possible. We are advancing in treatment and community support, and you are not alone.

How does your organization collaborate with healthcare professionals and researchers?

Ms. Epsy: We work closely with HS specialists and physicians to educate our community about the condition and ensure access to the most effective treatments, including biologics, surgery, and the latest research findings. Each year, we partner with researchers and invite new physicians to our summit to expand access for patients. We are also dedicated to identifying barriers to care and collaborating with healthcare professionals to ensure that patients receive the highest quality treatment possible. Our mission is to bridge the gap and ensure that no one living with HS feels unsupported in their journey.

A sincere thank you to Ms. Jasmine Espy for generously sharing her experiences and for the meaningful contributions she has made and continues to make in the HS community. It has truly been a pleasure to learn from you and engage in this insightful conversation.