There are nights when Tanya Mohan can’t sleep because the itch is so bad. Then there are the mornings she wakes up to find her bed sheets stained with blood from scratching her skin raw from the night before.
It’s not just dry skin the 37-year-old is keeping her up at night – it’s atopic dermatitis, also known as eczema.
“This is something I’ve been dealing with my whole life and I’m still suffering from it – it’s actually the worst it’s ever been,” Mohan, who lives in Toronto, said. “I haven’t slept a proper night’s sleep since I was born.”
Mohan was diagnosed when she was just a few months old and is the only one in her family who suffers from the chronic condition.
Her family had no idea how to handle her pain, which only got worse as she grew up.
Even doctors never fully grasped her condition.
“Growing up, my treatment was always topical steroids and I was told it should go away,” she says. “At the time in the late 1980s and early 1990s, I think my caregivers and clinicians only saw it as itchy skin. I saw multiple dermatologists throughout my life and I think my parents ever saw it as just itchy skin, so the management was always putting creams on it and it will go away.”
But it never did.
“Having moderate to severe eczema is like having chickenpox 24 hours a day, seven days a week, all year long,” Mohan explains. “It can really weigh on you. I wasn’t sleeping, I had scars all over my body so I was self-conscious the way I looked as a young woman and no one ever talked to me about what it would be like to live with this.”
Her symptoms, she says, included intense itching which caused her to scratch, creating opened wounds which burned, often times resulting in bleeding and oozing patches of inflamed skin.
Living with eczema has impacted every aspect of her life both physically and mentally, Mohan says. From work, to being a mom to engaging in everyday activities – the days can be painful and unpredictable.
“The physical part of eczema – yes, it’s very painful,” she says. “A lot of us suffer in silence because no one really understands, but the emotional component… that emotional stress really plays a part here as well.”
It wasn’t last year, however, when Mohan finally saw a dermatologist who understood her condition.
“For the first time ever, a practitioner said to me, ‘I’m really sorry you’re suffering with this. I can see that you’re really suffering.” I just broke down,” she says. “How have I waited 36 years for someone to say this to me.”
Eczema, the Eczema Society of Canada (ESC) explains, is a “chronic, pruritic, relapsing inflammatory skin condition that impacts the quality of life.” It can impact people of all ages but is most commonly diagnosed in children and the onset typically happens between two and six months of age. It is caused by a dysfunctional skin barrier and dysregulation of the immune system. This is due to genetic, immunologic and environmental factors. It is not contagious.
Mohan is among the estimated 17 per cent of Canadians who live with atopic dermatitis, the Canadian Dermatology Association (CDA) reports.
Due to the volume of new treatment that will soon become available in the near future, the ESC wanted to look into how the chronic skin condition affects Canadians today by releasing a report titled the Atopic Dermatitis Quality of Life Report.
The report surveyed 1,035 people across the country – 377 adults living with eczema and their caregivers, and 658 children and their caregivers.
According to their findings, half of all eczema sufferers lose eight nights of sleep or more every month due to their condition.
One in three report missing work or important life events because of their disease and 30 per cent have had to change jobs.
“Eczema itself is a spectrum condition and can go from mild to severe,” Amanda Cresswell-Melville, executive director of the ESC, says. “Mild eczema can usually be managed but when it’s severe, it can significantly impact life. So if you think of yourself as itchy all the time, having painful sores that can bleed and ooze, it really can impact anything from work to relationships and intimacy, to the inability to exercise.”
The report also found that 27 per cent of people have waited six months or longer to see a dermatologist about their eczema, while 42 per cent say they’ve visited a doctor four or more times in the past two years to manage their symptoms.
And 29 per cent say they’ve used 15 or more different treatments in hopes of finding relief.
The reason for this, Cresswell-Melville speculates, may be due to the fact that there just aren’t enough dermatologists in Canada.
“In Canada, we have a very low number of dermatologists compared to our population so it is certainly a challenge,” she says. “Patients are waiting – some are waiting over a year and depending where you are in Canada you may have no access to a dermatologist.”
For Creswell-Melville, this report indicates that there’s a gap in care for sufferers and it needs to be addressed.
“These patients need improved access to dermatology care and we need new and effective treatments for moderate to severe atopic dermatitis sufferers,” she says. “I hope this report also helps the general Canadian population understand that eczema is so much more than just dry and itchy skin. People who suffer from it have real quality of life impacts and that the burden of disease is significant. We don’t ever want that burden to be minimized, which is the way patients often report they are made to feel.”