I am an HS patient, just like you. I have had HS for almost 30 years and have seen little to no progress in the way we are treated, how information is disseminated, available treatment options or actual research. I have been experimenting on myself for almost seven years. I have had incredible success at putting my HS into remission and keeping it there. My journey and experiments are documented in the bestselling book The Hidden Plague: a field guide for surviving and overcoming Hidradenitis suppurativa, available on Amazon.com and at Barnes & Noble.
In March 2016, I was asked to speak at the American Academy of Dermatology’s annual conference in Washington, D.C. (scroll to the bottom to see the speech!). I ran some surveys and presented the results to the doctors. I mentioned what incredible results we had gotten from dietary changes and talked about the importance of gut health in the management of HS. I told them that we wanted safe, effective treatments and research, not brutalizing, unnecessary surgeries. My speech fell on deaf ears. I was sent the feedback and findings of the forum, which stated that, although they thought the information was well presented and relevant, the Academy was going to focus their efforts on further drug trials and new surgical procedures.
Recently, I was asked to take part in a historic survey. This time, several major dermatological agencies from around the world are working together. I’ll be providing more information as it’s released and interviewing the doctors involved in October. The survey may eventually help with getting disability benefits, having drugs like Humira covered by insurance and educating doctors so it is definitely a step forward, but they are not looking into specific treatments for individuals like you and me, who want to manage their HS drug and surgery free. I was asked for my feedback, so I mentioned this. I was told that individual triggers couldn’t be tested for in a lab, as there are too many variables. I concur. We all have different individual triggers and it’s up to us to identify them. However, I sincerely do not believe that a pharmaceutical or a surgical cure for HS exists, and I don’t think that what these people are surveying ultimately matters in our daily management of the disease. I believe home remedy trials, like the ones we will be performing together, are going to help more HS patients find relief.
It takes doctors and researchers many years and thousands of dollars to perform rigorous testing, and many things (like the stuff we’ll be testing) will never see the inside of a lab. I want to be able to manage my own HS. I want you to be able to manage yours. I’m tired of waiting on the medical community to help us and I’m really tired of hearing all kinds of crazy, ineffective solutions and treatments coming out of the HS Facebook forums. If we want safe, effective treatments and home remedies we are going to have to run these trials ourselves. Because of my position in the community, I can’t knowingly recommend something for HS patients without first doing my due diligence, i.e. making sure something works. Myths, misinformation and wives tales unwittingly get people’s hopes up, or in the rare circumstance, can even end up hurting someone.
I am recruiting you to help gather information so we have a broader picture of how these interventions and home remedies work in the population at large. I am not a doctor or a health care professional so these trials and surveys are for informational purposes only. Your personal information will remain confidential. The results may be shared with interested medical professionals but are mostly for the use and informational purposes of HS patients and other people interested in managing their own inflammatory skin conditions. I am not being paid to do this and do not have any vested interests, with the exception of finding effective home treatments for my community. (That being said, a purchase and review of The Hidden Plague and encouraging people with HS to sign up for these trials would be much appreciated.)
Sign up today and be part of the solution! You must be 18+ years old. You will be sent a welcome package with further information once the trials start. There is no cost to join, however you may occasionally have to purchase supplies for yourself (~$20 USD) depending on the specific trial.