Leisa Prescott suffered 24 years of inflamed abscesses and nodules on her skin, but doctors didn’t know why.
The sores began to develop in her groin, she had to get an incision and drainage to manage the condition.
After visiting dozens of doctors who were dismissive of her symptoms, it began to take a toll on her mental health.
“The scarring, the inflammation, the smell sometimes, is all very overwhelming, especially for a young girl,” Ms Prescott said.
“I was turned away by doctors who said, ‘Oh, it’s just acne’ and each time it just chips away at your confidence.”
Ms Prescott, now 51, had over 300 surgical procedures to target the scarring and inflammation.
One of the biggest challenges has been trying to overcome the shame of her condition – she’s been without a partner for 20 years.
“I made excuses to people, to partners back then, that I was allergic to certain things in the environment because we just did not know what it was,” she said.
Chance diagnosis of skin condition
In 2013, a chance encounter at Brisbane’s Princess Alexandra Hospital finally gave Ms Prescott the answers she needed.
While discussing her condition at an appointment, an Austrian doctor overhead and diagnosed Ms Prescott with Hidradenitis Suppurativa (HS).
“He had seen overseas what the disease was and that’s when my diagnosis was formally made, when I was 37,” she said.
Ms Prescott — who lives in the Bundaberg region — trialled treatments at the hospital but, because the condition had made such an impact over the years, the results were mixed.
HS is an inflammatory skin disease, where recurring lumps form under the skin in areas prone to friction.
Compared to men, women are three times more likely to have the disease, with overseas studies suggesting a higher susceptibility in women of colour.
The disease affects less than 1 per cent of the population, according to researchers at Princess Alexandra Hospital.
Diagnosis takes longer in Queensland
In Australia, HS is severely under-researched — dermatologist Erin McMeniman is one of the few experts in Queensland.
She suspects the number of people with HS could be higher than estimated, due to medical professionals missing vital signs.
“It’s been very much a condition without enough awareness, and it hasn’t been well taught in medical schools and in training programs,” she said.
“I think we really need to address the junior doctors, emergency department doctors and GPs, because this is where the patients present first.”
Dr McMeniman said research patients in Brisbane experienced a longer delay than the global average.
“International studies showed seven years, but actually, our data in Brisbane was over a 10-year delay to diagnosis,” she said.
A lack of wider expertise in the area has led to people with HS starting their own support groups.
Steph Friend was diagnosed in 2021 after first experiencing symptoms in preschool.
Like Ms Prescott, doctors didn’t take her medical concerns seriously, even after she received a diagnosis.
“I got my diagnosis, and I walked in and [the doctor was] like, ‘Oh, okay, well, you know, it mustn’t be that bad’,” she said.
Now 34, Ms Friend is determined to change the perception of HS in the wider community.
She started a not-for-profit organisation called Hidradenitis Suppurativa Australia, which provides users a platform to discuss the illness.
Last year for HS awareness week, the group lit up various Brisbane landmarks in purple, including the Old Cleveland Lighthouse and Victoria Bridge.
Her own “horrid” experience with specialists and overcoming a sense of loneliness led to the group’s creation.
“I wanted to make change and not have people go through that,” Ms Friend said.
Researchers hopeful
Though there is no existing cure for HS, research trials exploring alternative treatment therapies are underway.
“As reassurance for patients suffering with [the] disease, we’re recruiting for a trial at the PA Hospital,” Dr McMeniman said.
“We are hoping that we have new and better therapies down the track as well.”
In a statement, Queensland Health said anyone suspecting they may have HS should seek an assessment from their GP, who may advise on a dermatologist referral.
Hidradenitis Suppurativa Awareness Week takes place in the first week of June each year.
� 2020 Australian Broadcasting Corporation. All rights reserved.
ABC Content Disclaimer
