Latoya Palmer started classes in modern ballet when she was just 3 years old. For the next 21 years, it would take her around the globe – to Jamaica, Germany, Mexico and more. She taught classes on modern ballet and planned to minor in it in college, with a major in child and youth work. “It was my life,” she says.
When Palmer was 17, she found a lump in her right breast. At the time – swamped with college prep and her dancing – she chose to ignore it. Then it started to hurt, and another lump appeared in the left breast. The pain worsened and eventually became impossible to ignore.
Between 17 and 21, Palmer was misdiagnosed with more than seven different conditions, including various ulcers and abscesses, STDs, cellulitis, obesity. “At one point,” she says, “they asked me if I was breastfeeding, even though I didn’t have any kids. It’s insulting.”
Her doctors performed a breast reduction surgery because they believed her condition may have been kissing ulcers. “It wasn’t until I bumped into a nurse during one of my drainage appointments and they said ‘Hey I know someone who can help you with HS.’ ”
Hidradenitis suppurativa — commonly abbreviated as HS — is a lesser known “chronic and devastating skin condition, characterized by painful and recurrent boils and abscesses in skin folds,” according to Scarred for Life, a report by the Canadian Skin Patient Alliance.
The report is an effort to bring awareness to the disease that affects as many as four per cent of Canadians. Common symptoms include pain, discharge, and what CSPA describes as a “foul-smelling odour.” As many as 4 per cent of Canadians suffer from HS. It is often debilitating and while no cure exists, there are several treatment options.
“We don’t fully understand the pathology of HS,” says Dr. Raed Alhusayen, a dermatologist and assistant professor at the University of Toronto. “We know, from a genetic perspective, that about 30 per cent of patients with HS have a family member with the disease.” Onset around puberty also indicates that hormones may play a role in triggering the disease.
“All of these factors coming into play creates a disease where the immune system is attacking the hair follicles and the surrounding sweat glands, called apocrine glands,” says Alhusayen.
HS patients are also at significant risk for multiple comorbidities, including metabolic syndrome, depression and autoimmune diseases.
“All of these,” says Alhusayen, “need to be managed and that cannot be done by just a single member of the healthcare system.”
According to Scarred for Life, the median diagnosis time for HS patients in 2019 was seven years (down from nine years in 2017). Patients reported an average of three misdiagnoses before HS was identified and 48 per cent had made five or more visits to different physicians.
Unlike many HS patients, the time between first symptoms and eventual diagnosis was relatively short for Mike Wiens, an actor and photographer living in Peterborough.
“Most people,” says Wiens, “have a little bit of arthritis with their HS. I have a little bit of HS with my arthritis.”
For Wiens, the pain started three months into theatre school. “I start getting a lot of pain every day and I was a slapstick actor, so a lot of pain is not a good thing.” Originally, Wiens was diagnosed with fibromyalgia, a diagnosis that fell short when – at age 22 – he started losing his teeth.
“I get a doctor that changes my life: a doctor who doesn’t brush me off, who actually listens to me. The first time he met me, he changed my life. He says: ‘Mike, you don’t have fibro. I don’t know what the hell you have, but I’m going to find out.’ The more he looked, the more he found.”
Weins noticed boils in his armpits but did not tell his doctor. After they disappeared, he got similar ones in his groin. It took a year before he mentioned anything to his doctor, who also noticed he had three herniated disks and high blood pressure. “I’m too scared to tell him about the boils, because I’m thinking I’m going to scare him off or overwhelm him or something,” Wiens says.
He kept them hidden until one of the boils resulted in a hole in his scrotum that would not heal. After that, “I got really lucky. (My doctor) took one look at it and said: ‘I know what you have.’ ”
The stigma around HS exists for a number of reasons. Chief among them, according to Alhusayen, is the perception by patients that they are being blamed for their condition.
Another reason, according to Stephanie Carter, co-founder of the advocacy group HS Heroes, is that living with HS can be humiliating.
“It’s an embarrassing disease,” she says. “We get it in places that people don’t talk about in public. There’s a lot of stigma and embarrassment around it.”
Carter’s HS originally presented during puberty. She remembers asking her family members to smell her. “There’s an odour associated with the lesions and I felt like I stunk all the time,” she says.
Alhusayen says one reason HS takes so long to diagnose is that physicians receive little training in dermatology.
“They can go through medical school without any clinical exposure. They might have a week or so – depending on the program or university they’re studying at – of class-based training in dermatology. It’s quite possible they could graduate without setting foot in a dermatology clinic.”
The painful boils and skin abscesses can – even on close inspection – mimic benign skin infections. A person suffering from the early stages of HS may wind up in an emergency room with someone who has never encountered the condition.
“The cycle keeps repeating itself. The patient is referred, maybe, to an infectious disease specialist who would place the patient on antibiotics. It takes a while to put it all together. They [the boils] keep coming back. While a skin infection should respond to one or two courses of antibiotics, these patients continue to suffer,” says Alhusayen.
HS management includes a three-tiered system: medical therapy, surgical intervention and supportive care.
While there is no 100% effective cure, antibiotics with anti-inflammatory properties can be used to control some of the symptoms. Additionally, biologic therapies can turn the immune system away from targeting the hair follicles, blocking some of the inflammatory properties of the disease. Forms of hormone therapy also have been shown to be effective.
“We also recognize the role for surgery,” says Alhusayen, “Patients who have those deep tunnels in the skin, especially those with the more severe forms of the disease, would require surgical intervention to remove those tunnels under the skin.”
According to the CSPA, 68 per cent of HS patients do not have insurance plans that cover the costs of their therapies, at least in part because HS is often debilitating, making it difficult for them to find work, says Alhusayen.
Palmer’s group, Hidradenitis and Me, brings those suffering from HS together to support each other.
“Hidradenitis and Me started after one of my surgeries – I’ve had 15 all together,” she says. “It was a very traumatic surgery, mentally, physically and emotionally. I was struggling to accept that I had HS and my pastor suggested that maybe part of my healing was helping others.”
Palmer says HS can be incredibly isolating, even with family around. “They’re not going through what you’re going through. So I decided to show people that they’re not alone.
“We get accustomed to putting on this persona like we’re always strong when, really and truly, we’re dying inside. When you meet people who join the group, it’s like a breath of fresh air, like ‘Ah, I can finally take this mask off.’ ”
Palmer’s most recent surgery was July 15 last year. “Every time I had surgery, it would reappear somewhere else on my body,” she says. It was hard to parent because my HS got worse when I was pregnant. Here I am with a newborn and I can barely move around.”
Since her surgery, Palmer’s HS has quieted down significantly. She’s been able to return to many of the things she had to leave behind. She now spends her time roller-skating with her daughter but has not yet returned to ballet.
“I think about it all the time,” she says, “I’m going to be honest, I’m very scared. Anything that makes you sweat can trigger your HS. A doctor once told me ‘HS is like trial and error’ so, in order for me to know what works and what doesn’t, I’m going to have to try… and I want to try.”
To improve treatment for HS patients, the CSPA has put forward a list of 11 recommendations to government and healthcare authorities, broken down into 5 categories:
I. Raising awareness about HS to support quicker & more accurate diagnoses.
II. Ensuring patient access to diagnostic tools and collaborative care.
III. Supporting patient access to safe, effective and affordable treatments to manage HS system
IV. Include strategies to manage the impacts of HS on daily life in comprehensive care plans.
V. Supporting the needs of people living with HS.