How Katy, a Patient Turned Advocate, Found Her Purpose

Katy Shusta isn’t letting HS define her: Instead, she’s become a fierce advocate for navigating life with the disease one post, one conversation – and one person like her – at a time. 

Katy’s personal story of living with the disease has reached people with HS far and wide, many of whom say they felt invisible until they saw her. But before Katy became an advocate, she was a kid navigating mysterious pain and a teenager wondering if anyone else out there felt the same.

HS is a chronic and often painful skin condition that causes recurring boil-like bumps that may burst into open wounds and cause irreversible scarring. It can have a profound impact on both physical and emotional well-being.^1,2 In fact, as many as one in 100 people worldwide may be living with HS, yet many go undiagnosed or struggle to find effective care.^1,3 This is due in large part to the persistent stigma that surrounds the disease, exacerbated by distressing symptoms like pain and itch, and a general lack of public awareness.^2,4,5

The Long Journey to Diagnosis

Katy’s early symptoms were misdiagnosed as boils or acne, leaving her confused and isolated as a kid. It wasn’t until she was 17 that she received an official diagnosis. It was a moment of relief after nearly a decade of uncertainty. But while she finally found an answer, the physical and emotional toll of the disease grew as she struggled to balance the stresses of early adulthood with the complexities of managing her HS.²

Through her teen years, Katy internalized the condition as something to hide. While her peers navigated friendships and fun, she carefully concealed her scars, sat out of pool days and learned to anticipate flares before class trips. Katy notes, “Anything that sets you apart at that age is devastating. I was so embarrassed, lost and confused.”

Anything that sets you apart at that age is devastating. I was so embarrassed, lost and confused.

By the time Katy entered college at Ohio State University to study social work, the weight of living with a highly stigmatized disease had taken a toll on her mental health. She started to understand that managing HS meant navigating more than just physical pain.²

In fact, she describes her HS journey as a rollercoaster, with ups and downs that often mirror her flares.

Beginning to Find Support 

During some of her most challenging moments, Katy turned to therapy, which helped her reinforce the importance of emotional support in managing her life with the disease. She says, “Living with HS means having limitations and accepting this reality has been critical for my mental health.”⁶ As Katy slowly began opening up to friends, the feelings of isolation began to ease. 

After college, Katy became a social worker, driven to help others who face the kinds of challenges she knew all too well. However, soon after starting her career, Katy needed surgery, a common HS treatment, to remove painful lesions – a process that left her physically and emotionally scarred.⁷ 

Throughout her journey, Katy’s therapist, friends and family helped her feel grounded when things began to spiral. Her parents, in particular, played a pivotal role. 

Living with HS means having limitations and accepting this reality has been critical for my mental health.⁶

From Patient to Proud Advocate for Others

With encouragement from her best friend, she started sharing her story more publicly via a social media page dedicated to raising awareness for HS. The response was powerful: people reached out to connect, to open up and to say that her story helped them realize they might be living with undiagnosed HS. Katy’s advocacy has guided her own journey and become a vital part of her mental health and healing.

Today, Katy is a vocal advocate for the HS community. She works alongside patient groups and partners like Novartis, using her experience living with HS to advocate for better care, more empathy and increased awareness of the mental health toll that often accompanies this misunderstood disease.⁵

Above all, she wants people living with HS to know that they’re not alone. Today, Katy is an avid patient advocate, helping others find support and education through resources like Shine a Light on HS, empowering people to better understand HS and take the next step in seeking treatment.

“I want to help others understand that it’s OK to not be OK—and to depend on others for support,” says Katy. “You are not alone, and there is a community of people in your life or virtually who truly care.”

Visit ShineALightOnHS.com  for resources and to hear more real stories from people living with HS.