Hidradenitis Suppurativa –
A Patient and Advocate’s Journey

Being diagnosed with Hidradenitis suppurativa (HS) changed my life. The disease itself, yes, but so did knowing what I was up against. For 3 years, my disease progressed from stage I to stage III, abscesses, wounds, tunnels, and scar tissue on nearly every place on my body where skin touched skin. What I didn’t know was that HS is a follicular occlusion, so it would appear anywhere there is a hair follicle, which meant later on, I could and would experience abscesses, scar tissue, and some tunneling on my ears, back of my thighs, and legs. With all that I’ve experienced, I don’t know where I would be if not for my initial diagnosis, even if it occurred three years after I developed HS. What I appreciated about my journey at the time of my initial diagnosis was that I received a confirmation from one of the top HS specialists in the country and, arguably, the world. In this instance, receiving a diagnosis also meant starting a treatment regimen. Because I was under the care of an HS specialist, I was introduced to emerging medications and management tools.

Without my dermatologist, I would not have been able to participate in clinical trials, receive life-changing surgeries, and have access to medications that helped to manage my symptoms. In addition to helping me manage my disease, my relationship with my dermatologist helped me break into the HS community as an advocate, influencer, and nonprofit founder. He was the catalyst for everything I experienced to this day, he and my therapist whom he recommended. They would humbly deny taking credit, but they empowered me to become the woman I am today. I wouldn’t have considered transmuting my pain to heal myself and others without their encouragement. My story and delayed diagnosis is just one example of the challenges that HS patients face and why this community needs the advocacy and support the HS Coalition provides. The HS Coalition helps to:

• Raise Awareness and Reduce Stigma: HS is often misunderstood, misdiagnosed, and carries a social stigma. The coalition serves as a platform to raise awareness about HS, educating the public and healthcare professionals.
• Advocate for Research and Treatment: The coalition also advocates for increased research funding and the development of more effective treatments for HS. By advocating at both the policy and healthcare provider levels, the coalition can ensure that the unique challenges and needs of individuals with HS are recognized and addressed in research and treatment protocols.
• Improve Access to Care: Access to quality healthcare is a significant concern for individuals with HS. The coalition works to influence healthcare policies, insurance coverage, and treatment guidelines, aiming to improve accessibility to specialized care, medications, and surgical interventions.
• Community Support and Empowerment: Living with HS can be isolating, and the coalition can provide a sense of community and support. By fostering connections among individuals with HS, the coalition can empower them to share experiences, coping strategies, and knowledge.

I recently attended an event with the California Legislative Black Caucus centered on health equity and addressing treatment barriers for conditions that disproportionately impact communities of color. I was invigorated by the conversation and inspired to connect with Sam Chung, Dr Akilah Weber, and other patient advocates and nonprofit leaders to continue attending these events.

One of my favorite points on health equity came from California State Assemblymember Dr Akilah Weber, who said that in America, your zip code is often more important than your genetic code when assessing your life expectancy and health outcomes. When I heard this, I immediately thought about the underserved communities within the HS community and what we as a coalition can do to help close some of these obvious gaps.

Another powerful quote, about bedside manner, came from Transplant Policy and Strategy Director of the National Kidney Foundation Morgan Reid, who said, “People don’t care how much you know until they know that you care.” This is something for us all to remember as we engage and educate dermatologists treating the HS community.

As co-chair of the HS Coalition, first and foremost, I hope to foster a comprehensive understanding of HS among healthcare professionals, policymakers, and the public. This includes promoting research initiatives to enhance diagnostic methods and treatment options. By bridging the knowledge gap, I aim to reduce the stigma associated with HS and ensure timely and accurate diagnoses.

As we continue to progress, I see the HS Coalition improving patient access to care by collaborating with healthcare institutions and insurance providers to create standardized, evidence-based treatment protocols, including making cutting-edge therapies and medications more accessible so the unique needs of individuals with HS are addressed.

Ultimately, my vision for the HS community through the HS Coalition is a healthcare landscape where Hidradenitis Suppurativa is met with understanding, empathy, and efficient, accessible care through strategic advocacy, awareness campaigns, and critical collaborations. So much has changed since I was diagnosed, and I pray we continue upward.