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 Hidradenitis Suppurativa. After four more surgeries, intensive genetic research, GI mapping, and feedback from the HS community we have reached the conclusion that a strict elimination diet, avoiding all nightshade veggies, gluten, dairy, all grains, nuts, sugar, and seeds is the most effective treatment for me.
HS is an extremely painful autoimmune, autoinflammatory disease with little research and funding behind it despite millions of sufferers. It is estimated that up to 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.”
As a senior thesis project I 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 Friedenthal, 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.
Now I'm fortunate enough and incredibly proud to present a TEDx Talk I delivered on HS. The year following its release, it racked up tens of thousands of views. Watch it below.