new biologic medication brings hope to patients with uncommon skin condition: 'we can take our lives back'
9 minute read
“having these medications is a beautiful thing because we can take our lives back,” latoya palmer says of living with hidradenitis suppurativa and the introduction of a new treatment option.
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from june 3 to 7, foundations, advocacy groups, and patients living with hidradenitis suppurativa (hs) band together to help spread awareness for the disease—one of which most people, including medical professionals, know very little about.
this year, people living with the disease have a little something more to celebrate now that health canada has approved another biologic therapy to help manage the disease. before its approval, there were very few forms of treatment, leaving people with hs to contend with excruciating symptoms, the potential for harmful complications, and a higher risk of developing depression or anxiety—all of which can lead to a severely reduced quality of life.
latoya palmer, a child and youth counsellor, hs advocate, and mother of one, has been living with hs for over 20 years. she first developed the condition at 17, but it wasn’t until 21 that she was officially diagnosed because of a lack of understanding surrounding hs, even from medical professionals.
“nobody understood anything that i was going through,” latoya said. “there wasn’t another family member that had it, so nobody knew exactly how i was feeling, and then you go to the doctors, and the doctors don’t know.”
dr. susan poelman, a double-certified dermatologist and president of the canadian hidradenitis suppurativa foundation (chsf), has seen a positive change in the last eight to ten years regarding available treatments and knowledge about hs. however, for the most part, it is still an underrecognized and underserved community.
“there’s just not a lot of awareness about hs in the general population and even in the medical community sometimes,” she said.
dr. poelman works with hs patients firsthand and knows just how difficult it can be to get a proper diagnosis if you don’t get in to see a medical professional who knows what it is. people living with the condition also often deal with stigma and shame surrounding their condition.
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“patients with hs oftentimes don’t feel comfortable talking about their symptoms or even seeking treatment,” said dr. poelman, later continuing, “it’s tough when you have to go to work, and you can’t walk because you have such a painful boil in your groin, and you can’t tell anybody about it. it’s embarrassing.”
“it’s incredibly debilitating when you can’t sleep in the same bed as your wife because you have constant drainage, and you’re soaking through your pyjamas or the sheets. it definitely affects quality of life. it’s common for hs parents to avoid taking their children to the swimming pool because they have boils under their arms and people stare, and they’re afraid of being embarrassed or stigmatized.”
what is hidradenitis suppurativa?
hs is an inflammatory skin condition that presents as painful lumps. roughly one-third of people who develop hs have a positive family history, with the remaining cases developing without a direct cause.
the lumps that form in hs are deep and found in the folds and skin-to-skin contact areas, such as the armpits, beneath or on the breasts, inner thighs, and genital area.
the onset of hs typically begins around the same time a person hits puberty, and the initial nodules often resemble deep pimples. as they grow, they join into a large abscess that breaks open, spilling blood and pus with a foul-smelling odour. those assigned females at birth are more likely to develop hs, but it does affect all people regardless of sex or ethnic background.
people living with unmanaged hs deal with pain so debilitating that they may become bedbound, and there is a stigma associated with the disease because of its cosmetic appearance and odour, leading to people being at a higher risk of developing comorbidities, including anxiety and depression, and reduced mobility due to heavy scaring.
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earlier diagnosis of hs is crucial when it comes to developing a treatment plan, which often includes either antibiotics or humira, a biologic medication.
a commonly misdiagnosed condition
before being diagnosed, latoya had to contend with all sorts of differential diagnoses, with some medical professionals blaming her weight, diet, and hygiene, among other things, for the onset of the disease.
“at first, they thought it was a breastfeeding infection, but i didn’t have any kids at the time,” said latoya. “(then) they said, ‘okay, well, maybe it’s just an abscess,’ but then it kept coming back. and then they said, ‘oh, it’s kissing ulcers.’”
it’s not uncommon for hs to go misdiagnosed, and according to research, people who develop the condition wait an average of seven years before getting an official diagnosis and proper treatment. latoya waited four years for her condition to be diagnosed. in the meantime, she lived with such excruciating pain she had to give up her career as a contemporary and modern ballet dancer.
“because of the pain (and) because it became so aggressive, i had to stop dancing completely, and then i just changed my field altogether,” she said.
people living with undiagnosed hs are also left to figure out what’s going on with very little medical help due to the lack of knowledge about hs within the healthcare community. in some cases, they end up in various medical situations, trying to get to the bottom of things.
“it’s (hs) commonly misdiagnosed as ingrown hairs or folliculitis,” said dr. poelman, later continuing, “oftentimes, these patients wind up in not only emergency rooms, but they can wind up in infectious diseases clinics getting antibiotics for this. it’s mistakenly misdiagnosed sometimes as an infection, and patients think that they’re contagious. so, it’s a problem, and it does touch many, many areas of medicine.”
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the new biologic in town
the current treatments available for hs don’t always work for everybody. since there has been a lack of research surrounding hs and limited viable therapies, those who don’t respond to current therapies are left without any other options.
antibiotics have been the first-line therapy for hs for decades, but since it’s not an infectious disease, these drugs and their anti-inflammatory benefits can only go so far. in some cases, using antibiotics to fight an inflammatory condition can do more harm than good because of how the body adjusts to the medication, leading to antibiotic resistance and a higher risk of severe bacterial infections in the future.
because of the risks associated with long-term antibiotic use and their minimal efficacy against hs, drugs that work to curb inflammation are the best options. now that the latest health canada approval of cosentyx (secukinumab) has gone through, people living with hs have another treatment route to take to manage symptoms.
“when a patient has a lot of high burden of disease in terms of inflammation in their body, we make the analogy of an avalanche,” dr. poelman said. “you don’t show up to an avalanche site with sand toys, and that’s the analogy i made with topical therapies and some of these other medications that we give to hs patients.”
“we need something that’s going to be able to handle the burden of inflammation, the burden of disease that patients are experiencing with moderate to severe hs, and that’s where we show up with these biologic medications that are specifically designed to powerfully calm down the inflammation in the body.”
cosentyx, along with the other biologic used for hs, humira, are strategic drugs that work directly on inflammatory processes within the body, lessening symptoms in people with the condition. this provides hope to people with hs and those who will develop it because of the limitations of current therapies and treatments of the past.
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latoya has experienced it all, from antibiotics to surgery to remove growths. before she was able to take humira, which has been managing her disease well for the last year or so, she went through 17 major surgeries, tried several antibiotics, and still didn’t find enough relief to get her life back.
“by the time i got properly diagnosed, i’d gone through several medical treatments, several antibiotics. i found out i was allergic to certain antibiotics that help manage hs because, at that time, they didn’t have any medication to manage hs,” she said. “i basically had surgery everywhere you could think of and all the parts where women sweat because that’s what hs does.”
dr. poelman has already had the chance to give her patients the new biologic since its approval just a short time ago, and in that time, she has already seen improvements in the symptoms and quality of life of those living with hs.
“since we’ve been prescribing it, it has made a significant impact on quality of life,” she said.
the importance of spreading awareness
hs has a prevalence rate of one to four per cent and an incredibly distinct presentation. even so, the condition remains highly underrecognized even in the medical world. because of that, spreading awareness about the condition is just as important as it has ever been.
“enhancing public awareness about it (hs), but also the general awareness of the condition within healthcare professionals would be excellent,” said dr. poelman.
latoya knows just how important it is for hs to be more well-known from her personal experience with it. when she was going through it, she struggled with feelings of isolation, anger, sadness, and hopelessness because her friends, family, peers, and even some medical providers she saw had no idea what it was.
instead of waiting for someone else to create an hs community, latoya did it herself, starting with an instagram page that continued to grow followers who also lived with hs. eventually, her small introduction into advocacy to cope with her condition and all that it entails led to the development of hidradenitis and me, a support group for hs warriors and their families.
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“i thought maybe i need to write a book to make people understand what i’m feeling because pain changes people, and it messes with your mental health. you can’t think straight being in so much pain all the time, but i could not put the pen to the paper,” she said. “i went to my pastor, and i said, ‘i want to talk about this, but i don’t know how because i’m so hurt,’ and he says, ‘well, maybe you can heal by helping other people.’”
after that conversation, latoya decided that she was going to use her experiences to help other people living with hs, and she created the hs community that is now readily available for anyone else who needs guidance, assistance, or just someone to vent to that truly understands what it feels like living with hs.
looking toward a bright future living with hs
now that more conversations are being had about hs and research is picking up speed in terms of finding new ways to treat the condition, such as the newly released cosentyx, people living with hs are now able to feel hope for a better future—even if there is still a long way to go to get it the recognition it deserves.
“there are so many unmet needs in caring for patients with hs. the hill is steep ahead of us in terms of meeting their needs. but we are making a difference,” dr. poelman said. “there’s a lot more work to do, but the important thing to emphasize … is that there is hope.”
as for latoya, she wants people to know how important it is to advocate for yourself when you are dealing with hs. it’s also crucial to get on the right medication because, when that happens, “it kind of gives you your life back.”
“having these medications is a beautiful thing because we can take our lives back,” she said. “we want to get out of survival mode and get into thriving mode, and a part of getting into thriving mode is finding a treatment that works for you.”
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