Michele, Thank you for the article and the time you spent on the article. Your resource information is a bit dated. A Geneticist has identified the particular level in the Genome and has identified the the specific marker for HS. Maybe I missed it, but little is mentioned about the pain associated with the disease. I have lived with it for more than 40 years, the pain levels HS patients live with is severe. Antibiotics are almost always ineffective. Research has consistently confirmed that HS cultures absent secondary infection, will culture negative. While strong evidence supports that Androgen and Hormone imbalances will exacerbate the condition, few doctors ever run the studies to correct those imbalances.
There are a number of "Support Groups" that are online, however, caution should be used. There are only two that I know of that are not supported by commercial backers. You mentioned HSF, I am personally familiar with the organization and the do good work. The other is HS-USA. (www.hs-usa.webs.com) HS-USA was one of the first HS non profit groups out there that has supported research and treatment options. The site has a ton of information available to the Medical Community as well as for Patients. There is a forum available to post questions and get responses. There is also a chat room available to members and a 24 hour emergency support line.
I extend an open invitation for you to join us at any time. We also work closely with a Facebook group at https://www.facebook.com/groups/HSKnowledgeiskey/
Thanks again for your time and work
HS-USA forums Moderator and Site Manager