A global registry for patients with Hidradenitis Suppurativa that have also had covid-19 has been developed by UCSF, in collaboration with the HS Foundation, the Canadian HS Foundation, Hope for HS, and other global Hidradenitis Suppurativa organizations. Cases of covid-19 in people with HS can be registered via a short survey about the experience, either…
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…
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…
Maybe you’ve seen the miraDry videos in your social media feed and wondered if it could help your Hidradenitis Suppurativa (HS). According to the company website, the miraDry System uses thermal energy that targets and eliminates the sweat and odor glands in your underarm. Once those glands are eliminated, they do not grow back. In theory,…
An online survey, created for patients by patients from The HS Diet Connection, is collecting data about food triggers for Hidradenitis Suppurativa. This thorough, anonymous survey should take no more than 15 minutes of your time, and will provide valuable insight into which food triggers are most common among patients with HS. This survey is intended…
