Education, Support, and Hope
The Hidradenitis Suppurativa Foundation is a nonprofit public benefit corporation dedicated to improving the quality of life and care for individuals and families affected by this inflammatory skin disease.
Hidradenitis suppurativa (HS), an inflammatory skin disease that affects 1% to 2% of the population in the United States,1 has been around for a long time. It was first described in 1839 and has carried numerous sobriquets since then. In all that time, it has been an orphan disease, drawing some attention, enough to sometimes control it (with treatments), but never enough to really make inroads that provided actual long-term results. In the last decade, however, giant strides have been taken in both diagnosis and treatment.
New Treatment Options
The tumor necrosis factor blocker adalimumab (Humira) is the first medicine labeled by the FDA for the treatment of HS. In addition, new laser surgical procedures are available that can eliminate the smoldering scarred tissue left by the disease and give people a chance to live without this so very obvious stigmata of HS. Mirroring these scientific and therapeutic achievements are the personal achievements of the people who suffer from this debilitating disease.
Advocacy and Support
In April 2005, 2 people with HS launched the hs-research.com. website. The website was well received and the Hidradenitis Suppurativa Foundation (HSF) soon followed. The mission of the HSF is:
• to support patient care,
• to promote physician and patient education, and
• to encourage research aimed at the control and cure of HS/acne inversa.
From these humble beginnings came other sister organizations, including the European Hidradenitis Suppurativa Foundation, which was formed in 2012, and the Canadian HS Foundation, which was founded in 2014. During this time, a reinvigorated HS Foundation Board of Directors was established, representing experts in clinical care and research from throughout the United States.
The board was joined and supported in this mission by its first pharmaceutical partner, AbbVie. A major effort was undertaken to develop a geographically-identified Physician Action Network. The goal of this network is to help patients find physicians with expertise in the care of HS. In addition, a list of Hidradenitis Suppurativa Specialty Clinics is available at http://www.hs-foundation.org/hs-specialty-clinics/. If you are a medical provider and have an HS specialty clinic that you would like added to our list, please email our executive director at firstname.lastname@example.org.
If you are interested in receiving information from the HS Foundation, please go to our website: www.hs-foundation.org and click the sign up to receive information button at the top so that we can include you in our email list.
One mission of the HSF is to promote physician and patient education. The 2nd Symposium on Hidradenitis Suppurativa Advances was held in November in Detroit, MI.
The Symposium is an interdisciplinary forum for leading academic scientists, clinicians, and researchers to share their experiences, discuss innovations, and research regarding HS. The 1.5-day meeting is for specialists and primary care physicians, and provides a range of interactive educational sessions in the format of courses, forums, and plenary sessions on HS-related topics from bench to bedside.
At the meeting we held an innovative educational session, HS School, which is especially for HS patients. HS School is an opportunity for patients and their loved ones to hear about HS from the experts, in language they can understand. Topics of discussion included the current understanding of the causes of HS and an overview of treatment options, as well as many talks on what patients can do to help themselves. A Q&A session included ample time for patients to ask general questions about HS.
Your participation is invited in future symposia. To learn more about upcoming events, please visit http://www.hs-foundation.org from time to time.
The HSF is excited about what the future will bring in our efforts to conquer HS, and hope you will join us.
1. Jovanovic M, Kihiczak G, Schwartz RA. Hidradenitis suppurativa. Medscape. https://emedicine.medscape.com/article/1073117-overview#a2. Updated August 7, 2017. Accessed November 19, 2017.