The Hidradenitis Suppurativa community was one of the early communities on StuffThatWorks. To date there are 1300 contributors who have contributed to the research by answering 60-100 questions each.
In treatments and symptoms alone, the community members have reported on their experiences with 709 different treatments and 114 symptoms. The community is growing at a rate of 10-20 new contributors each week.
The result is the first large-scale Hidradenitis Suppurativa knowledge base of real world evidence. This knowledge base captures the baseline characteristics of the patients like
age, sex and gender through their HS journey, from age of onset and their early symptoms to the current Hurley Stage and aggravating factors; and most importantly, the treatments patients have tried, what they’re taking now, how effective they are, and whether or not and to what extent each treatment was successful or detrimental. Importantly, the knowledge base does not ignore the "mundane" aspects of life, such as the quality-of-sleep, the stress level, relationships and their impact, physical activity or diet. The aggregated, anonymized data is made available and constantly updated on the StuffThatWorks HS community site. In addition to accessing the data, members can chat privately to ask details about treatment experiences, pose research questions to all members, and join in community-wide discussions about HS. Once the community reaches 2,000 contributors, members will be able to see insights about which treatments are most effective for subgroups, and at 10,000 contributors the insights will become personalized.
Read Yael Elish, the founder of StuffThatWorks, story here.
You can explore insights and learn which treatments the HS community members tried, and which ones worked best for them.
In the HS community, the most reported trigger is stress. However, when we analyzed the data alongside all of the chronic conditions on the StuffThatWorks platform, the most indicative trigger, specific to HS, is sweating.