Dermatologists are trying to bring more awareness of a chronic skin condition that causes severe distress to patients
Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease impacting around 130,000 adult Australians.
The estimated prevalence of HS in Australia is 0.67% of the adult population – or one in every 150 adult Australians.
HS can be disabling and disfiguring, often causing deep tunnelling, boil-like wounds that ooze pus and create scarring that cannot be reversed.
And sadly it can take up to seven years on average for HS to be diagnosed; during this time patients can be subject to irreversible skin damage.
“The first thing we need to do is continue to raise awareness of this poorly recognised condition,” dermatologist Clinical Associate Professor Saxon Smith tells AJP.
“It can take up to seven years to be diagnosed and people with HS would be interacting with health professionals along that journey, including doctors and allied health professionals such as pharmacists.
“Early identification of HS is crucial, as early referral to a dermatologist for appropriate treatment could help prevent irreversible skin damage.”
HS involves multiple treatment including antibiotics, different types of surgery, and Humira (adalimumab), which was added to the PBS this month.
With the listing of Humira on the PBS, eligible patients with HS now have another treatment option available for the condition.
Many patients can feel like they have given up, and need encouragement to go take that next step to see a dermatologist, says Associate Professor Smith.
They also need help with taking care of their skin while dealing with the condition.
“Pharmacists have an active role to play in the multidisciplinary team,” says Associate Professor Smith.
“One way pharmacists can really help, and one of the real challenges of this condition, is dressing [the lesions] with appropriate dressing to help absorb the thick pungent discharge.”
Having all healthcare professionals understanding the condition and “singing from the same song sheet” would really help those dealing with HS to get the right care, he says.
Krystal McDonald, 32 – Morningside, QLD
When Krystal McDonald was 15 she started experiencing painful lesions on her upper thigh and groin.
She didn’t know it at the time but they were caused by HS.
When Krystal went to a doctor for help, he was confronted by the symptoms and without assessing the lesions, sent her away with a script for antibiotics.
For Krystal, lack of awareness meant that she spent her adolescence and early adulthood living with constant pain and scarring that would make it difficult for her to walk.
“It took 11 years of me living with HS before I actually got to see a dermatologist who knew what it was. But by this time it had gotten so much worse,” Krystal recalls.
By the time she was in her late twenties, Krystal had given up on the things she enjoyed, like playing hockey, doing cross-fit, going to the beach and even socialising with friends.
“At school, I didn’t tell anyone. I would do whatever I could to hide it. Something like going to the beach just wouldn’t happen, I would flat out refuse.”
Tony Maroun, 28 – Sydney, NSW
Until just over a year ago, 28-year-old Tony Maroun from Sydney’s western suburbs could be found wearing a full tracksuit with hooded jumper, every single day of the year.
Even in the searing heat of summer, Tony would keep his body, arms, legs and neck fully covered. It was the only way that he could keep the symptoms of a debilitating condition hidden from view.
Tony is living with HS.
“I was just going from doctor to doctor with everybody having a different opinion,” says Tony.
“Everyone was looking at the outer thing, not the inner causes, Originally the doctor said it was an ingrown hair because it looked quite similar. Then they thought it was a cyst not realising it was something much deeper.
“It’s so painful that you can’t even sleep. Just being able to feel comfortable to walk along with people in the street was hard.”
Tony sought strength in his supportive family and, after seeking treatment for HS through a dermatologist, was able to better manage the condition.
“Don’t let it hold you back. Go and see a dermatologist and in time you’ll be comfortable in your own skin again.”
For more information on HS visit http://www.hs-online.com.au/