Many people with eczema rarely mention the chronic skin condition. “People generally do not talk about their eczema. It is something that is often personal and private to them,” says Amanda Cresswell-Melville, executive director of the Eczema Society of Canada (ESC).
However, she says, sharing information on what it’s really like to live with eczema is key to helping others understand the scope of the condition. “We are encouraging people suffering with eczema to seek the care they need and deserve, to speak to their doctor, and let friends and family know what they are living with so that people may understand their journey,” says Cresswell-Melville.
Stemming from a range of genetic and immunological causes, atopic dermatitis (AD) —commonly referred to as eczema – affects both adults and children. The resulting patches of dry, flaky rash are often so itchy that they can keep people up at night, scratching until they bleed. In a recent ESC survey, more than four fifths of respondents reported losing sleep due to their atopic dermatitis.
Sustained periods of poor sleep can lead to all sorts of other issues, including decreased productivity at work, memory issues and depression. In addition, having red, flaky skin can make people very self-conscious. In the same ESC survey, 48 per cent of respondents said AD had prompted them to avoid social activities. Respondents also report avoiding exercise and intimacy, and missing work due to the condition.
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The ESC has just released a video called A Day With Eczema to help Canadians better understand the wide-reaching effects of the condition. It paints a clear picture of AD’s wide-reaching effects. Watch it below.
“People perceive it to be just a skin thing,” says Tanya Mohan, the Toronto resident featured in the two-minute video. “But really, it affects so many aspects of your life.”
For instance, she explains, people with eczema need to avoid certain fabrics, perfumes or cosmetics, as these can lead to outbreaks called flares. Temperature and humidity can make AD worse, so the condition can fluctuate with the weather. One day she can feel pretty good; the next day, with little warning, she may wake up itching intensely. “That’s the trouble with this condition,” she says. “It has to be managed 24/7, 365 days of the year.”
Mohan has lived with AD since she was a baby, and she says it can be particularly hard for adolescents. As a teenager, for instance, she avoided wearing shorts or going on swimming outings with friends. One time, when she did wear a skirt, a passenger on a packed streetcar asked her loudly if the red flares on her legs were contagious. (For the record, eczema is not contagious.)
“I was mortified,” Mohan recalls, two decades later. “I’ll never forget it.”
However, she considers herself more fortunate than many, because her AD was diagnosed early and she was able to quickly get a referral to a dermatologist. Canadians living in smaller communities and rural areas might have to wait longer for help, she explains, as their GP may not recognize the condition or may not know the range of treatments available.
Until recently, treatments were largely limited to topical prescription creams. Most patients moisturize their skin constantly throughout the day with over-the-counter moisturizers, as well. However, within the last few years, new treatments have become available that have brought welcome relief to some people with AD. Mohan, for instance, has started taking a new medication twice a month that has helped reduce her flares significantly.
“I started that in July of 2018. By September I was itch-free. My skin had totally cleared up. It was phenomenal,” she says. However, she adds, she still needs to manage her eczema carefully. “This is a chronic condition and so it doesn’t ever actually go away.”
Partly because of success stories such as Mohan’s, Cresswell-Melville of the ESC urges people with eczema to talk to their doctors and get the medical help they need. “We are having this really exciting time in research where there are many new therapies in development,” she notes.
Visit the Eczema Society of Canada’s website at eczemahelp.ca to share your story of living with AD as part of the #ADayWithEczema campaign, and to find resources for both patients and medical professionals.