Thursday, April 20, 2017
Jackson Gillies burst onto the Santa Barbara musical scene as a 16-year-old when he became the winner of Teen Star 2016. He’d moved to town with his family the year prior to seek medical help for his auto-inflammatory disease hidradenitis suppurativa and was still settling into being a San Marcos High School teen when his spine-tingling performance of “Nessun dorma,” from Puccini’s opera Turandot, garnered him the Teen Star title. Since then, the now 17-year-old singer/guitar player has shared the stage with myriad legendary musicians including Jim Messina, Chris Judge, and Kenny Loggins. “I will never ever forget [my experience],” Gillies told me when we met on a recent Saturday at Vices & Spices coffee and teahouse.
Our meeting was not only to talk about his musical rise but also to discuss an upcoming concert he’s put together, called Something That Matters — which will feature performances by a slew of Santa Barbara musical heavy hitters including Morganfield Burnett, Fausto Cuevas, George Friedenthal, Judge, Tom Lackner, and Randy Tico — to raise awareness of his fairly uncharted, seldom-heard-of disease. HS, as it is commonly called, is a chronic auto-inflammatory affliction that is associated with the lymphatic system and results in the formation of abscesses on the skin, particularly in the areas of the armpits, the chest, and the groin. Gillies was diagnosed with HS in 2013.
With the disease commonly showing for the first time at puberty, Gillies’s initial flare-up presented itself with a large abscess on his hairline. His parents took him to an endocrinologist, two dermatologists, and two surgeons in New York, where they were living at the time, but no one could diagnose the reason for the outbreak. The abscess was removed, and Gillies was given antibiotics, which had no effect, since it’s not caused by bacteria. Nearly a year later, when he experienced multiple severe eruptions on his legs, a doctor recognized it as HS. “The abscesses don’t always come to a head, and they are where skin meets skin, so they are constantly chaffing and tearing,” he said. “I had eight on each leg; I didn’t walk for six weeks, not because they stopped my muscles, but literally because they were so painful.”
There is no pill for it; the best remedy is diet. “Elimination diet is the way to go,” Gillies said of how he got his HS under control. “Find what foods make you flare, and then stop eating them. I eat … chicken, lamb, salmon, turkey, salad greens, carrots, celery. No wheat, no gluten, no dairy. No spices, nothing. Literally, just salt and pepper. My lymphatic system is so backed up it never breaks down what can’t be digested, and so it comes out through the skin because it has to go somewhere,” he continued. “The abscesses [can] get so big — I had one under my armpit the size of a tennis ball.” Although it’s not life-threatening, Gillies said it’s in “the top five of most painful” ailments.
Although Gillies is dealing with some serious health issues — he is also diabetic — the young musician exudes excitement and possibility. He’s found a mentor in Loggins, is in the process of writing songs, getting ready for his performance in the Adderley School’s musical How to Succeed in Business Without Really Trying (May 13-14 at the Lobero), and is eager for the Something That Matters event. “This whole show is about awareness,” he said of the concert. “I put the poster up on some [HS] blog pages, and in the week since, I’ve already had, like, 40 people ‘Like’ my page and, like, 180 view it. There are no celebrities who talk about it. Karl Marx is the only person in history who I’ve found who has talked about it,” Gillies said with a chuckle. “I spent four hours with this one girl on the phone just sorting out every possible thing, cutting all the foods, telling [her], ‘Don’t do this; don’t do this …’ That’s what I want to do. It was amazing. It was absolutely so heartwarming to be able to help someone. I want to be an advocate. I want to be a spokesperson [for HS].”