Mike Lanigan, an HR professional in Toronto, has been dealing with severe eczema since he was a child. He says the sleeplessness he experiences because of the skin condition is one of the most difficult challenges he faces.
Lanigan says the lack of sleep has made it hard to perform well at work or school the next day. Since stress can make outbreaks worse, Lanigan says he has also avoided taking on overtime and other stressful work when his disease was at its peak.
Together, those factors hindered his career prospects, he says. “You limit what you can achieve with your life, based on the condition.”
Lanigan’s story proves that eczema is often more than just an occasional patch of mildly itchy skin.
“For patients with moderate to severe persistent disease, it can be debilitating and life altering,” says Amanda Cresswell-Melville, executive director of the Eczema Society of Canada (ESC), adding that eczema is not typically viewed in this way.
It’s the reason the organization started a nationwide social media campaign called #LifewithEczema, which received the 2019 Public Education Award from the Canadian Dermatology Association.
The campaign invited Canadian eczema sufferers to submit their personal stories about living with eczema using the hashtag #LifewithEczema. Its compelling images, videos and quotes from patients detailed the harsh challenges associated with the disease.
What is atopic dermatitis?
Atopic dermatitis (AD) — commonly known as eczema — is a chronic multifactorial inflammatory skin condition involving genetic, immunological and environmental factors.
Affecting both children and adults, it leads to patches of dry, flaky skin, often on the creases of the arms and legs, hands, face, but can also affect multiple areas of the body. Many people hope it will disappear on its own, but it is a chronic disease that can have a significant widespread impact on multiple areas of life, especially if moderate to severe, says Dr. Rachel Asiniwasis, a Regina dermatologist and ESC board member.
“It’s beyond just a skin-barrier defect,” she says, adding that one root cause is an inherent structural anomaly, making it easier for bacteria and other irritants to get through and leading to chronic itching, open skin, and/or infection.
Health problems that are more than skin deep, study shows
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Childhood cases are often stressful for parents as well as children. According to a Quality of Life report by ESC, 55 per cent of caregivers reported losing sleep due to their child’s AD and 69 per cent noted that they suffered from anxiety specifically related to their child’s illness.
For eczema sufferers themselves, lack of sleep caused by the condition can lead to many other problems, says Asiniwasis. “Eczema is linked to many complications, for example, secondary infection, depression, anxiety in children — they might even have symptoms of ADHD.”
Both adults and children with AD may develop such irritated skin that they scratch themselves to the point of bleeding.
Even people with mild eczema may become so self-conscious of their irritated skin that it affects their lives significantly, holding them back from socializing.
“You miss out on social activities,” says Lanigan, adding that he often avoided activities like going to the beach with friends because of his condition.
Rather than sitting on the sidelines of the fun because of embarrassment or physical discomfort, many eczema patients just stay home, he says. “You get a lot of depression as a result of it.”
Unfortunately, the idea that AD is “just itchy skin” persists, leading many to avoid visiting a doctor, even though treatments are available.
“Dermatologists, pediatricians, allergists and your family doctor are able to help you, so if you are suffering with this condition, please go to your health care provider and seek some solutions,” urges Cresswell-Melville.
Lanigan seconds this advice. After years of trying various remedies that didn’t work, “I just got in the mindset of, well, there’s nothing I can do.”
However, a serious AD flareup prompted him to see a dermatologist, who prescribed a new medication that has significantly improved his condition.
He now enjoys solid nights of sleep and, as a result, he is better able to work. “I’ve gotten a few promotions and have achieved things in my career that I don’t think I would have otherwise, if I didn’t have access to these treatments.”
Long wait times and a lack of expertise get in the way of treatment
However, securing an appointment in the first place is a hurdle many patients face. In some regions of Canada, including the area of southern Saskatchewan where Asiniwasis practises, people face long wait times to see dermatologists.
According to ESC, 69 per cent of adult Canadian AD patients wait three months or more for a dermatologist appointment and one in four wait half a year or longer.
With that being said, new treatments are currently in development, Asiniwasis says. So even if people haven’t had great success with topical treatments, it’s worth making another doctor’s appointment to find out what’s new. “It’s not necessarily just steroids, steroids, steroids anymore,” she says.
Another potential stumbling block to getting treatment, she adds, is finding a family doctor with a deep understanding of the disease, especially in under-served regions where wait times to see a dermatologist can be lengthy.
To help support primary care physicians, the ESC has developed resources such as informational brochures to distribute to patients and detailed medical guidelines to help doctors assess the severity of a patient’s condition and prescribe appropriate treatment.
Asiniwasis applauds Cresswell-Melville and the ESC for collecting and sharing information on the disease and for the campaign’s award earlier this year.
“It’s evident that interest in this condition is growing,” she says, adding that she hopes the publicity will lead to a rise in diagnosis and successful treatment of eczema. “It needs to be more proactively treated, and I think that starts with awareness.”
Visit the Eczema Society of Canada’s website at eczemahelp.ca to share your story of living with AD, and to find resources for both patients and medical professionals.