Way back in 2013, I got what we now think was an abscess related to a Hidradenitis Suppurativa flare. The large abscess started to form on my head. I named it Bob. I went to my endocrinologist, two dermatologists and two surgeons in New York, the abscess was removed, a long course of antibiotics and steroids were prescribed and no diagnosis was given.
Almost a year later, flares that prevented me from getting out of bed for six weeks led to a diagnosis of Hidradentis Suppurativa. After four more surgeries, intensive genetic research, GI mapping and feedback from the HS community we have reached the conclusion that an AIP yeast-free diet could be the most effective treatment.
HS is an extremely painful autoimmune, autoinflammatory disease with little research and funding behind it despite millions of sufferers. It is estimated that 4% of the population has HS and there is a lag time of 12 years before diagnosis. It has been referred to as a “hidden plague,” as onset is in puberty and few teens feel comfortable sharing about painful abscesses in the groin and underarms. One surgeon said, “It isn’t a sexy disease with lots of money to be made in Pharma.”
I recently produced a Hidradenitis Supparativa Awareness Concert with the best of the best in Santa Barbara’s music scene including Kenny Loggins, Tariqh Akoni, Randy Tico, George Feiedenthal, Tom Lackner, LaNesha Latimer and Fausto Cuevas. I am so thankful to all the folks who have helped me along the way while we figure out how to put HS into remission once and for all.
*Check out the Something That Matters HS Awareness Concert Video on my YOUTUBE Channel