Hidradenitis suppurativa (HS) is a chronic, inflammatory skin condition believed to be caused by an overactive immune system.1,2 It often presents with painful bumps and abscesses that drain and may result in tunnels that can leave scars.1
About the Disease
HS is believed to be caused by an overactive immune system, which can lead to painful bumps, abscesses, and scarring in areas where skin rubs together such as the underarms, thighs, and groins.1,2 HS is not contagious or due to poor hygiene, and up to 40% of people may have a family member with the condition.1 HS can be classified into three stages based on symptom severity: mild, moderate, and severe.3 HS is mostly seen in women and disproportionately affects people of color.4 Hormonal changes may also contribute to HS symptoms and can lead to HS flares, making the symptoms worse.5
While not rare, HS is a condition that’s rarely talked about, with some patients waiting an average of up to 10 years to receive an accurate diagnosis, which can result in disease progression and may significantly impact their quality of life.6,7 The signs and symptoms of HS typically appear after puberty, most often in a person’s 20s, but they can develop earlier or later in life.1,7 Early treatment is key to help reduce the risk of scarring and manage flare-ups.7
Living with HS can be a difficult and emotional journey.3 Daily activities may become challenging as symptoms interfere with routine tasks.3 People living with HS often experience feelings of shame, isolation and depression alongside their physical symptoms.3
Every patient journey is unique, and there is no one-size-fits-all management plan to treating HS, but with the right support, patients can find relief and better manage the condition.8
Novartis is committed to supporting people living with HS by raising awareness of the condition and the daily challenges it presents. Through close collaboration with the HS community, we help elevate patient perspectives, foster connection and work to reduce the stigma surrounding this chronic, often isolating disease. By deepening understanding and championing patient voices, Novartis aims to help create a more informed and compassionate environment for people living with HS.
Highlighting the Unmet Needs in HS
Understanding HS Patient Experiences
In a social listening study designed to understand HS-related treatment patterns and management strategies, researchers analyzed social media content from patients in the United States, France, Germany, Italy, Spain and the UK between November 2019 and October 2021.
The data visualization below illustrates key findings from 1,626 social posts.
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Ready to learn more and connect with the HS community?
Visit the Shine a Light on HS website for practical tips to help manage daily life with HS, educational resources about your treatment options, supportive connections with others who understand your journey, and the complete Beacons docuseries where you can hear directly from Jasmine and other people living with HS.
VIDEO
Jasmine's Story
Watch as Jasmine reflects on her experience with HS, her relationship with her body and how she found her purpose.
Jasmine, an HS patient, was compensated for her time