SAN ANTONIO – Hard to pronounce, hidradenitis suppurativa is “the worst condition you’ve never heard of because it’s typically hidden,” said Dr. John Browning, a dermatologist, in describing the chronic skin condition.
“Typically affecting under the arms, the groin, folds, under the breasts, stomach. It can be very disabling,” Browning said. “It’s really a form of chronic acne.”
The cause is unknown, he said, although there probably is a genetic component.
Because many patients tend to hide it, Browning said, many people may be unaware that a relative has it.
He said HS will show up sporadically, “Usually any time acne shows up on the face, chest and back.”
But he said “garden-variety acne” will respond to antibiotics.
“Hidradenitis supparativa is slower to respond, harder to get that lasting, enduring response.”
Browning, like one of his HS patients, Eris Hilburn, said he was encouraged when he saw an “American Idol” contender, Jackson Gillies, talk to the judges about living with HS and Type 1 diabetes.
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“I think that’s tremendous because, I think, 'That’s somebody who's come out of the shadow, into the open,'” Browning said. “He said, 'This doesn’t define me, this is just something that I have.'”
A vocal advocate living with HS, Hilburn said it was uplifting to hear a young man with a singing career sounding so positive about life.
Hilburn also said she was thrilled to hear one of the judges, her musical idol, Lionel Richie, acknowledge the disease.
“That’s something I never thought was possible,” Hilburn said.
Hilburn said it’s her calling to make others aware of the illness. She has a Facebook page for HS patients like herself, in addition to other helpful links.
Although it took years of research on her part and that of physicians who didn’t know what she had, Hilburn said the average time of getting a diagnosis has gone from eight years to only two.
“For them, it might seem like a long time,” she said. “But that’s a relief for us because now people are recognizing it. Doctors are recognizing it.”