Way back in 2013, Jax got what he now thinks was an abscess related to a Hidradenitis Suppurativa flare which he named Bob. He went to his endocrinologist, two dermatologists, and two surgeons in New York. They did not know what it was. The abscess was removed, a long course of antibiotics and steroids were prescribed, and no diagnosis was given.
Almost a year later, flares symmetrically (a cruel HS feature) prevented him from getting out of bed for six weeks. He went to more doctors and an Infectious Disease doctor and finally it led to a diagnosis of Hidradenitis Suppurativa. Jackson has had 5 surgeries.
HS is an extremely painful autoimmune, auto-inflammatory condition 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, under the breast, buttocks and underarms. Many HS sufferers feel isolated. They experience extreme fatigue. Many are embarrassed about their HS and can never tell anyone or form meaningful relationships. There is a high rate of suicide. More women have HS than men.
Many HS sufferers like Jackson do not smoke, drink alcohol, eat wheat, dairy, grains, nuts, seeds, tubers, and nightshade veggies. That is why Jackson brought salads, veggies and meat in a cooler to American Idol. If he ate any of the foods above he would have another tennis ball sized abscess who knows where. But wherever it would land it would be on the opposite side of his body as well.
As a senior thesis project Jackson created, produced and played in the first ever Hidradenitis Suppurativa 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.
He is so thankful to all the folks who have helped him along the way while he continues to fight to put HS into remission once and for all.
What you see on Jackson's neck, is also on his back and chest. It is called ACNE CONGLOBATA. It too has no cure.
Jackson has been a Type 1diabetic since age 3 and became a spokesperson at age 7. He was in shock that there was little or no advocacy, research for HS after volunteering with JDRF for so long. Few people know about it or know that they have it.
He had to speak up.