After almost a decade of misdiagnosis, Ōrewa’s Scott Denham, 30, is speaking out about his chronic skin disease.
Scott has Hidradenitis Suppurativa (HS), an autoimmune condition where abscesses and boil-like nodules develop in the skin folds where glands are present, such as under the arms and in the groin.
“The slightest touch can feel like razor blades running across your skin. It sucks the life and light out of you,” Scott says. “Every step I take I’m leaking blood and pus.”
HS usually begins to develop in the teenage years to early 20s, and the exact cause is unknown. There is no cure.
Every few weeks or so, Scott’s HS flares up, which makes walking extremely painful. Because of this, he had to leave his job as a care worker at age 27 and move in with his mother, who helps look after him.
“It was awful when I had to quit work, but it got to the point where I was supposed to be taking care of others, but I couldn’t take care of myself,” he says.
His self-esteem also took a hit while trying to get diagnosed.
“Many doctors don’t know what HS is. I had one doctor tell me it was because I didn’t wash. I mean come on!”
Despite the fact that it is often misdiagnosed, the condition is not uncommon. According to the US National Centre for Biotechnology, the global estimate of HS sufferers is 0.03 to 4 percent of the world’s population.
“I asked a dermatologist once why HS is so unheard of. He said that because it isn’t a ‘sexy’ disease, people don’t want to talk about it,” Scott says.
Scott says the response from the community since sharing his story online at the end of last year has been positive.
“I was afraid to be known ‘as that guy with the skin condition,’ but those who have reached out to me have been very supportive.”
While it has been a long road for Scott, he has found hope in local doctor, Dr Marcia Walker from Manly Medical Centre. She prescribes him Tilray CBD oil, which Scott says is the most effective pain relief he has used in his 13 years with the disease.
Tilray oil is not government funded, and costs Scott $200 every 20 days.
If you would like to support Scott, visit givealittle.co.nz/cause/my-daily-struggle-living-with-a-life-long-non