Barriers to care and unmet needs are some of the most important topics hidradenitis suppurativa patients discuss with one another at our support group meetings and within our online community. In late 2018, I joined five other passionate patient advocates that are admins for Facebook groups representing over 25,000 hidradenitis suppurativa patient voices in a…
At the December 10th, 2019 Hidradenitis Suppurativa support group meeting of the Detroit chapter of Hope for HS, Josee Smith, BSc, and medical student at Wayne State University School of Medicine presented a summary and brief overview of topics and presentations from the 4th annual Symposium on Hidradenitis Suppurativa Advances, followed by Q&A from Angie…
Hidradenitis suppurativa (HS) is a horrible disease to live with. It is debilitating, stressful, embarrassing, and limits what we can do in our day-to-day lives. I’ve lived with the condition for over 16 years. I found out I had it when I was in college. I was tested for staph infection, after coming in with…
Newsflash? Probably not. Rallying cry? Let’s hope so! “Hidradenitis Suppurativa needs more research!” Of course, patients, caregivers, and advocates have been shouting this for years. But now an opinion written by two well-respected HS researchers from University of California San Francisco and Rockefeller University, who also happen to be on the board of directors of…
Hello, my name is MaKellee Kathryn Doty-Robinson, but to make it way easier, everyone just calls me Kellee. I have suffered from HS since I can remember, but was finally diagnosed in March of 2013, the day before my 13th birthday. My birthday present was a giant excision of HS out of the center of…
