ICYMI: Make HStory Platform Offers Hidradenitis Suppurativa Education and Community Support

The importance of physician education and community support in healthcare cannot be understated. Well-educated physicians are better equipped to diagnose, treat, and manage a range of medical conditions to ensure that patients receive the highest quality of care. Equally vital is the role of community support in fostering collaboration and comfort, enabling people to find strength in unity. Both physician education and community support, however, have been historically missing in hidradenitis suppurativa (HS) care. Global biopharmaceutical company UCB shared via press release that the company launched a new platform called My HStory in April 2024 to overcome obstacles and unmet needs within the HS community.

What is Hidradenitis Suppurativa?

Also known as: Acne inversa

Hidradenitis suppurativa is a chronic, long-term, inflammatory skin condition that affects 0.1-1% of people in the United States. It is more common in females, Black individuals, people who smoke, people who are overweight, or those in their 20s and 30s.

According to My HStory, hidradenitis suppurativa is:

characterized by nodules, abscesses, and scarring, often misidentified for skin conditions like acne or folliculitis, and mistreated because of years of misdiagnoses.

The average time from symptom manifestation to diagnosis is usually around one decade (10 years). Many people with this condition receive an average of three or more misdiagnoses during this time period.

The painful lumps caused by this condition appear under the skin in hair roots and near sweat glands: so often in the armpits, inner thigh, or groin (where skin touches skin). But these lumps can appear elsewhere too, as shared by the NHS. Without treatment, hidradenitis can worsen, leading to the development of abscesses (pockets of pus) below the skin that can break open to leak blood and pus. Shares the American Academy of Dermatology Association:

If the abscesses and scars continue to appear, tunnels can form under the skin. These pus-filled tunnels are called sinus tracts.

These symptoms, outside of the physical problems they cause, can also lead to feelings of distress, stigmatization, and low self-esteem.

There’s not a cure for hidradenitis suppurativa, but it can be managed with warm compresses, NSAIDs and antibiotics, corticosteroids, topical resorcinol, oral retinoids, hormone therapy, biologics like Humira or Remicade, and surgery. Your doctor can help you decide which treatment course is your best option.

Make HStory: A Revolutionary Educational Platform

UCB’s Make HStory is an educational initiative to provide better education, resources, and support for people with hidradenitis suppurativa and their dermatologists. Make HStory offers both a patient-focused and healthcare provider-focused website which includes stories from people living with HS, information on finding the right dermatologist, physician education material, interactive tools and resources, informational videos, PDF resources like “HS Questionnaire + Screening Tool,” and more.

This campaign also focuses on sharing and amplifying the diversity of patient experiences to empower patients and help people realize that they are not alone. Through Make HStory, patients and physicians alike will come away empowered to share their insights, educate themselves, and bridge existing gaps within the community.

Are you ready to Make HStory?

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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