It's Time to Advocate for Eczema

This has been adapted from an early draft of a speech I wrote for the Eczema Society of Canada’s Patient Education event in Toronto in November 2012. I ended up giving a different talk, but still felt attached to this one. So, here it is, adapted for my blog. As always, I am not endorsed or supported by any organization.

I’d like you to think bigger about eczema. This can be very difficult to do when your skin is itchy and you’re just trying to stop scratching all the time or you’re constantly telling someone you love to “Please stop scratching! You’re making it worse!”  So, this is your opportunity to do so.

I’m going to throw out some specific numbers. According to the Canadian Dermatology Association, up to 17 per cent of people will experience some form of eczema during their lifetime. According to EASE, about 10 to 15 per cent of children who have atopic dermatitis will continue to have it as adults. 40 to 50 percent of children with eczema will develop hayfever, asthma or both. During my search for specific data about eczema, I tried to see what Health Canada had written about it. The answer is absolutely nothing. The prevalence of eczema in the population – for children and adults – is over 10 per cent higher than food allergies (which is 5 to 6 percent in children and 3-4 per cent in adults), yet Health Canada has nothing to say.

I see increasing numbers of newspaper articles and blog posts on food allergy bullying. Horrible that it happens, but great that awareness is growing. I was even asked to share my experience on food allergy bullying by a Canadian blogger, but I had to tell her that I was never bullied because of my food allergies. I was bullied because of my eczema.

If I had to choose to get rid of one condition tomorrow, and I’ve got a few to choose from, I would choose eczema. I would happily stay allergic to pets, foods and pollen if the trade off was no eczema. Funny because it’s pretty unlikely that eczema can kill me. However, anyone with eczema or who cares for someone with eczema can probably understand my thought process when they think of the numerous emotional and physical impacts of eczema.

Yet, eczema is often thought of as somewhat annoying, dry patches of skin. Kids are told that they have to understand that scratching is bad for them and to “just stop”. On television, eczema is the purview of geeky geniuses like Sheldon from The Big Bang Theory and certainly not something anyone “attractive” or “normal” would have. The truth is that it can be a debilitating condition resulting in lost sleep, missed days of work and school and impacts everything from school work to family life to forming healthy relationships.

I am honestly not sure why eczema (and everything that falls under that blanket term) isn’t regarded as the serious condition it is. Considering some of the new research about the atopic march – essentially the movement from eczema to other atopic conditions and food allergies – eczema should be of great concern and more focus than it has been.

Skin is huge, literally and figuratively. Its importance should not be relegated to being a shiny, flawless canvas for make-up and shaving products designed to show one’s worth, but that’s exactly what it is in every magazine and television show. Skin is literally a barrier between us and the environment - a vital barrier. When it breaks down, it’s not that surprising that everything else does, too. Yet, we continue to layer on cosmetics and creams with known toxins (and some we don’t know about, because we allow companies to hide those ingredients under terms like “perfume” and “parfum”).

So, here’s the call to action, because I believe strongly in calls to action that result in more than a Like in Facebook or a retweet on Twitter. Change happens when people get chatty. Really, annoyingly chatty. We need to create more awareness about the importance and impact of eczema. We need articles in the press about eczema – it’s not contagious, it’s no reason to stare and it doesn’t make me a nerd. The fact that I’m a fan of Star Trek and Doctor Who makes me a nerd.

We need more research on eczema. We need more doctors who spend more time on atopic dermatitis, less time on cosmetic medicine and refuse to give up when a couple of creams don’t work. We need provincial and federal governments to acknowledge its devastating effects amongst all Canadians, notably Aboriginal populations. It’s no less than eczema deserves.

* Due to an increasingly busy work and volunteer schedule, AtopicGirl is going back to two posts a month. Thank you to everyone who’s kept in touch during my recent absence.