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Jun 07
Ally Funk, U.S. Communications
Disease Spotlight: Hidradenitis Suppurativa

At UCB, people are at the heart of everything we do, and part of our commitment to delivering impactful solutions for people whose lives have been challenged by severe disease is deeply understanding their disease. This week is Hidradenitis Suppurativa (HS) Awareness Week, and we’re sharing information on this lesser-known inflammatory, chronic autoimmune skin disease.

What is Hidradenitis Suppurativa?
Hidradenitis Suppurativa (HS), pronounced hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh, is a burdensome autoimmune disease characterized by extremely painful, boil-like abscesses with a foul-smelling discharge of pus. HS often occurs on the groin, buttocks, armpits, and breast area under the skin presenting as painful lumps or leaking sores.Most active disease occurs in adults ages 20 to 50 and is hereditary in 1 out of 3 cases, with a higher prevalence in women.It is often misdiagnosed for less severe diseases like acne.Because HS is visible to the eye, patients often report feeling uncomfortable in their own skin.3

How does HS impact patients?
HS is a progressive disease with unpredictable flare-ups that can occur every few weeks or months. Nearly 75% of people living with HS experience flares at least weekly, characterized by intensified inflammatory symptoms, including pain, discharge and itching.The symptoms often prevent people from participating in everyday activities like going to work or school.But this disease is more than skin deep.

In addition to the physical impact of HS, a recent survey showed a high frequency of depression among people living with HS.2 People living with HS often feel self-conscious about the smell of draining abscesses and fear others’ reactions to their condition, which may be mistaken as a sexually transmitted disease.2 The stigma associated with the disease often prevents people living with HS from seeking treatment and can exacerbate social isolation.2 

How is HS diagnosed and treated?
There is no definitive test for HS. Instead, healthcare providers will examine the site and type of lesions, combined with culture tests, blood tests, and a thorough discussion of family and medical history. It takes an average of seven years for a patient to be diagnosed, but may take up to 12 years. Many HS patients visit multiple doctors before receiving a correct diagnosis.The delay in diagnosis can result in the disease progressing to more moderate-to-severe HS, particularly for patients with aggressive progression.The long journey to diagnosis can also worsen mental health symptoms.2 

We are proud to contribute to advancing in the understanding of HS and are committed to continuing our mission to address unmet patient needs for patients living with this disease. 

 

References

  1. Ingram J. The epidemiology of hidradenitis suppurativa, Br J Dermatol. 2020;183:990–998.
  2. Esmann S, Jemec GB. Psychosocial impact of hidradenitis suppurativa: a quality study. Acta Derm Venereol. 2011; 91: 328-32.
  3. Shukla N, Paul M, Halley M, et al. Identifying barriers to care and research in hidradenitis suppurativa: findings from a patient engagement event. Br J Dermatol. 2020;182(6):1490-1492. doi:10.1111/bjd.18818
  4. Sarfo, A, Butt, M and Kirby, J. Periodic worsening, or flare, in hidradenitis suppurativa: the perspective of people with hidradenitis. Br J Dermatol. 2020;182:218-219.
  5. Kokolakis G, Wolk K, Schneider-Burrus S, et al. Delayed Diagnosis of Hidradenitis Suppurativa and Its Effect on Patients and Healthcare System. Dermatology 2020;236:421-430. doi: 10.1159/000508787

 

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