Hidradenitis suppurativa (HS) is a chronic, or long-lasting, inflammatory skin condition with often painful bumps or boils that come and go, mostly on areas of the body where skin meets skin, like the groin, inner thighs, buttocks, under the breasts and in the armpits.1-4 These bumps can lead to sores (or abscesses) that can leak and leave scars.1,3 While not rare, HS is a condition that’s rarely talked about, with patients waiting an average of up to 10 years to receive a proper diagnosis.5
Living with Hidradenitis Suppurativa (HS): Understanding the Patient Perspective
Unfortunately, for some patients, receiving a diagnosis takes even longer. Listen to Donna’s story on living with HS - after first displaying symptoms at 13 years old, she describes the pain she experienced and the impact the disease had on her life and career. Ultimately, Donna embarked on a long journey to receive a proper diagnosis and find a dermatologist who could understand her needs and could help her find relief.
Too often, people living with HS can be suffering in silence through pain, stigma, shame and isolation; with few effective, long-lasting treatment options.6
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 2021.7,8
The data visualization below illustrates key findings from 1,626 social posts, which indicated that:
- Pain was the most discussed ongoing symptom for HS patients (36%)7,8
- The most discussed ongoing HS management strategies were dietary changes (47%), skincare products (26%) and clothing (12%)7,8
Among social posts related to treatment, antibiotics (27%) and surgery (21%) were discussed most, while only 16% of posts focused on biologics, underscoring the significant unmet need for new and effective treatments.7,8
Novartis is committed to raising awareness of HS and working to address the unmet needs that exist for the HS community.