- Hidradenitis suppurativa (HS) is a painful, debilitating, chronic inflammatory skin disease estimated to affect 1 - 4 percent of the world's population(1),(2)
- Voices of HS Unite encourages people affected by HS to share their stories online, to raise awareness, reduce stigma and to have a conversation with their dermatologist
NORTH CHICAGO, Ill., June 4, 2018 /PRNewswire/ -- AbbVie, a research-based global biopharmaceutical company, today announced the launch of Voices of HS Unite, a global social media effort to connect and inspire those impacted by hidradenitis suppurativa (HS), a painful, chronic, inflammatory skin disease. The program, which is launching during HS Awareness Week (4 – 10 June), encourages people affected by the disease to share their stories on social media using #HSHope in their native language. Through connecting and empowering HS patients around the world, AbbVie aims to help strengthen the global HS community and to encourage patients to discuss their condition with a dermatologist.
Impacting approximately one to four percent of adults worldwide, with an average age of onset around 21, HS is marked by debilitating symptoms such as recurrent and painful abscesses and nodules on the skin – typically in areas of the armpits, groin, buttocks and breasts.1-3 HS can have a considerable impact on patients' daily lives, their work ability, physical activities and emotional state. The sensitive nature of the disease often results in feelings of embarrassment and isolation.4
"When you have a disease that not many people have heard of, it is easy to feel alone. I often struggled to express the impact HS has had on my life, both physically and emotionally," said Maria Goguen, who has lived with HS for 26 years. "If you have HS, or think you may have some symptoms, it's important for you to know that you are not alone. I encourage you to share your story, not only to raise awareness about HS, but also to make our voices heard and offer hope to others around the world."
"Although HS is a very serious, painful condition, it is relatively unknown, even among physicians. This leads to lengthy delays in diagnosis and treatment and patients have to wait for seven to eight years before they can put a name to their disease," said Dominik Hochli, vice president, global medical affairs, AbbVie. "AbbVie is committed to supporting those affected by HS. Voices of HS Unite aims to bring the community together by shining a light on their stories and elevating their voice so that they can receive the best possible support during all phases of their journey."
How to Get Involved HS patients, their loved ones and the community at-large are encouraged to participate in Voices of HS Unite by sharing their experience with HS through videos, photos, or written posts on any social platform using #HSHope in their native language. Through the stories of real patients, Voices of HS Unite aims to connect those impacted by HS, to offer hope and encouragement to seek the best possible care.
In recognition of HS Awareness Week, AbbVie is launching a Thunderclap at https://www.thunderclap.it/projects/70110-voices-of-hs-unite. Thunderclap is a platform that allows people to pledge a tweet, a Facebook message, or a Tumblr post, which are released all at the same time. Supporters are invited to join now, in advance of Sunday, 10 June when AbbVie will create a thunderous "social media moment" by sharing a unifying message of support for HS patients.
For additional information about HS, visit WhatsYourSoreSpot.com.
About AbbVie AbbVie is a global, research and development-based biopharmaceutical company committed to developing innovative advanced therapies for some of the world's most complex and critical conditions. The company's mission is to use its expertise, dedicated people and unique approach to innovation to markedly improve treatments across four primary therapeutic areas: immunology, oncology, virology and neuroscience. In more than 75 countries, AbbVie employees are working every day to advance health solutions for people around the world. For more information about AbbVie, please visit us at www.abbvie.com. Follow @abbvie on Twitter, Facebook or LinkedIn.
Jemec G. Hidradenitis Suppurativa. N Engl J Med. 2012; 366:158-64.Dufour DN, Emtestam L, Jemec GB. Hidradenitis Suppurativa: A Common and Burdensome, Yet Under-Recognised, Inflammatory Skin Disease. Postgrad Med J. 2014; 90 (1062):216-21.Collier F, Smith RC, Morton, CA. Diagnosis and management of hidradenitis suppurativa. BMJ. 2013;346.Zouboulis C.C., Desai N, Emtestam L, et al. European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa. J Eur Acad Dermatol Venereol. 2015;29(4):619-644.
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