AtopicGirl Is On Hiatus

When I started the AtopicGirl blog and Twitter feed, it was partly because I wanted to get some experience with social media. My background is in communications and social media is now a huge part of being a part of that discipline.

Over a year later, I've become heavily involved with volunteer organizations related to healthcare and politics - my two loves. Unfortunately, AtopicGirl has suffered for that recently as my volunteer involvements have increased. I love the positions I have, and honestly, without AtopicGirl I wouldn't have achieved what I have.

Still, I have to put aside my blog for now. I can no longer make the commitment it deserves. I hope this is a temporary situation and I will still be on Twitter, though in a limited capacity. I still have so many things to write about regarding eczema, allergies, asthma and mental health. I still think there's a lot of misinformation regarding these conditions on the internet and I've always thought my place was to provide a non-medical, but evidence-based opinion from someone who has these conditions and believes that scientific evidence is the best way to evaluate effective treatments, no matter the origin - from nature or from a lab.

I also still believe that while Canadians are fortunate to have universal health care, we do not have the best system in the world and can learn a lot more from other nations about dealing with chronic conditions.

Clearly, I have a lot to say still and hopefully, I'll be back soon to say it.

Thank you for reading and please don't hesitate to contact me.

Sincerely,

AtopicGirl (Tristan)

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.

You Are Your Best Advocate

Last evening, I had the opportunity to give a speech at the Eczema Society of Canada's (ESC) Information Session in Toronto. The turnout was great and I was on a panel with the father of an infant with eczema, a dermatology nurse and a paediatric dermatologist. It was a great mix and represented a lot of different perspectives, from the clinic, to the patient with eczema, to the parent of a child with eczema.

It sounds cheesy to say it, but I was honoured to be asked and the experience of talking with people afterwards was amazing. I was in a group where everyone "got it". I will admit I got a bit teary, because I discussed a very difficult period of my life that I've never discussed outside of my family or very select friends. I questioned my choice of topic until the last minute, but as I gave the talk and I saw people nodding while they listened to my experiences, I knew it was the right one. The feedback I received after the event was amazing and I thank everyone who took a couple of minutes to come and say hi, tell me about their personal experiences or ask about my blog.

So, here in a slightly modified form is the talk I gave last night:

I wrote a few different speeches with entirely different topics before I finally got to this version. I wrote one about what my day looks like. Practical, but boring. I also wrote one on the importance of government advocacy in the eczema community. That one was pretty hard to throw away, but a little too involved; so, I'm going to recycle it for my blog.

I finally came to this draft after working on getting some social media exposure for this event and after attending the Canadian Skin Patient Alliance conference in October. I volunteered at the Eczema Society booth during the weekend and it was amazing how many different stories I heard. Some people viewed eczema as a nuisance condition and compared to skin conditions that can be life-threatening, like skin cancer, I can see why they’d say that. One person told me that she’d always thought it was something she had to just deal with, but coming to the conference made her realize that she was ready to do something about her eczema and take control of it. I also heard stories about children who wanted to handle their own skin care routines and about teenagers who were sick of dealing with it. I understand all of that.

In my mid-20s, I had an extremely severe eczema flare-up. It was literally disabling. I was taking large doses of Benadryl throughout the day and night. I couldn’t sleep, let alone work. I was unable to wear anything but the softest cotton clothes, and sometimes even that was too irritating. I didn’t see any of my friends for almost a year. The only contact I had outside of my immediate family and doctors was through email or phone.  I was depressed and began seeing a psychiatrist again, recognizing that I needed help to cope. I refused to leave the house except to see my doctors who said that I just had eczema and there was nothing more they could do. But, I refused to accept this. I knew what my normal skin looked and felt like and that wasn’t even close. After begging  one of my doctors to admit me to hospital, he decided on a much stronger course of action than anyone had been willing to pursue. Within a few months, my skin was back to “normal” – my normal.

That period of my life was difficult and I do everything possible to make sure that it never happens again. I am vigilant about my skin health. I am and will always be my best advocate. If I don’t feel a doctor understands what I need from them, I explain and if they can't or won't understand, I find another one. If I don’t agree with or understand a recommended treatment, I ask questions and express my concerns. If a medication doesn’t work, I say so and try another one. My doctors are only part of my health care regimen.

I make decisions based on scientific evidence; so, while I don’t settle for less than I deserve, I’m also realistic and know that eczema is something that I will always have. For that reason, it's so important that I advocate for my health. It's my job to make sure that I work with my doctors and let them know what's going on in my health. It's my job to ask questions when I don't understand. It's my job to make sure that I follow instructions properly and stick to my regimen. No matter what happens with my eczema, ultimately, my health begins and ends with me.

*NB While I am a support volunteer for ESC, I am in no way endorsed or supported by ESC. My views and opinions are my own.

AtopicGirl's Little Secret

First, I will apologize for my absence. I've moved a couple times and my time has been taken up with new jobs (yes, plural) and a lot of volunteer work. The latter is the point of this post.

Over a year ago, when I started my blog and Twitter feed, I felt like there wasn't a lot of made-in-Canada information for people with food allergies and atopic conditions. That was a major reason why I started this. Happily, I realized I was wrong. There are great organizations like Anaphylaxis Canada, the Asthma Society and more.

About a year ago, I found out about another social profit organization - The Eczema Society of Canada. I signed up for the newsletter and when the Executive Director, Amanda Cresswell-Melville, put out a call through the newsletters for support volunteers, I signed up. It felt right and I was ready to do more.

So, in March I became a support volunteer. I've also had a post in the Summer Newsletter and had the amazing experience of volunteering at two events. The next events coming up are the Eczema Information Sessions in Calgary, Toronto and Montreal. I'll get back to that in a second.

The Eczema Society of Canada (ESC) was founded in 1997 by Dr. Bernice Krafchik and a group of parents with the goals of education, awareness and supporting research. Currently, ESC holds patient sessions like the Eczema Information Sessions, provides educational pamphlets (in hard copies and online in both official languages) and has support volunteers available to help others with eczema, like us or our loved ones.

My volunteer work, while it's just started, has been amazing. It's difficult to hear the struggles people have with eczema, but I do know that ESC is there to give hope and help in managing what can be a devastating condition. While growing up, I could have used a support group, or just someone to listen to "got it". For many people, eczema can a debilitating condition, physically and emotionally and ESC is there.

For those reasons and a dozen others, I'm ecstatic that I'll be involved with the Eczema Information Session in Toronto on November 12th. There will be additional information sessions in Montreal on November 8th and Calgary on November 22nd. The events will include speakers, including a dermatologist, trial skin products, a free educational package, light refreshments, and a chance to ask questions to an expert panel. It's also a chance to meet other people with eczema, of all ages.

If you or someone you know has eczema, please attend one of the sessions. If you're not able to do so, visit the Eczema Society of Canada website for comprehensive information about eczema management and to sign up for their newsletter.

If you do decide to attend the Toronto event, please say hi!


*NB While I am a support volunteer for ESC, I am in no way endorsed or supported by ESC. My views and opinions are my own.

Thanksgiving and Thankfulness

I know Thanksgiving is a North American thing and just to fragment that a little bit more, Canadian Thanksgiving is over a month before American Thanksgiving. Personally, that works well for us since coast-to-coast, Canada is stunning in autumn. Yup, there’s rain. But there are also gloriously sunny days when the weather is crisp, the air smells smoky and all the leaves are turning orange, yellow and (my favourite) red. It’s weather that makes you want to take a walk, visit a winery, go trick-or-treating and just generally get what you can out of the weather before you have to don a heavy coat and gloves.

As someone with food allergies and all atopic conditions, you’d think that Thanksgiving might be a difficult time for me. The thing is, that I’m grateful for the allergies that I do have. I could have more. I could have ones that are more difficult to handle. As it is, it’s pretty easy for my family to create an allergy-free meal that we can all eat without feeling like they’re missing out anything. There are often some dishes with butter (but I get my own version) or desserts I can’t share in, but since we spend Thanksgiving in Ottawa, I have two great bakeries to choose from – Auntie Loo’s (vegan with gluten-free options) and Thimblecakes (nut-free bakery with vegan and gluten-free – and more – options). So, I’m never at a loss and I don’t have to make my own dessert, though I’ve been eyeing an allergy-friendly plum tart I saw in the Globe and Mail a while back.

I don’t want to say that you should be thankful because “things could be worse”. That’s not all that optimistic. I’ve never loved the rationale that everyone in North America should be thankful because at least we’re not starving in Africa. There’s poverty throughout this continent and on every other continent, except Antarctica. Though at the rate we’re going, I’m a little worried about the penguin’s food supply.

So, as people with food allergies, let’s consider all the people who don’t have the money to buy things like gluten-free products, dairy-free products and nut-free products. Food allergies are not a problem limited to those of middle- and upper-incomes. Children, adolescents and adults who can’t afford to eat both well and allergy-free need our help, our knowledge and our compassion.

I really hope you contact your food bank and find out what food allergy-friendly food they can use throughout this year and contribute accordingly. Sometimes, that may mean simply donating money they can use to buy what’s needed.

Happy Thanksgiving!

Just to get you started, here are a few webpages to find out more. No time like the present!

Food Banks Canada (http://www.foodbankscanada.ca/)

Find a Food Bank (http://www.foodbankscanada.ca/utility-pages/find-a-food-bank.aspx)

101 Ways to Prevent Asthma, Allergies, Eczema and Hayfever

Okay, if you got here because you think I'm going to offer you advice on how to prevent anything, I'm not. The title is entirely facetious. If you've read my blog, you know that I don't believe in cures for non-curable conditions (atopy and allergies) and I don't offer medical advice.

Recently, I had a brief Twitter discussion resulting from this BBC News article: 'Super soup" test in asthma trial. It also followed a few discussions I had with some parents at a wedding a couple of weeks ago about the current "wisdom" regarding what mothers should eat during pregnancy to prevent their child developing a condition like asthma. For the moment, nuts seem to be the recommended food to eat during pregnancy.

The Twitter discussion ended up with both of us agreeing that we'd love it if there were one resource in which a parent could access all the things they're supposed to do and not supposed to do during pregnant. The list could include get more Vitamin E in your diet, get a cat (but don't change the litter box), eat nuts, don't smoke, don't drink, limit your caffeine intake, etc.

Since I have allergies and atopy, a list like this would be perfect for me since no matter what I do, should I have a child, he or she is very likely to have the same conditions. With one parent, the risk is 25 per cent, but risk is a funny thing. It doesn't mean that should I have four children only one would have the conditions. It means that every time I have a child, the risk is 25 per cent. Should the father have any allergic or atopic condition (even hayfever counts), that risks soars. Add in all the dos and don'ts and the fact that those change, and I think that a parent can do everything "right" and still end up with an atopic and/or allergic child.

A few years ago, the prevailing "wisdom" said that delaying the introduction of priority allergen foods for children would prevent them from developing allergies. Milk seems to be the exception there, which is probably more of a lobbying effort than anything else. My sister did that with all of her children. No allergies. However, the current "wisdom" is totally opposite, though they do say to introduce solid foods later, rather than sooner.

However, will the evidence suggest otherwise in a few years? Maybe. Probably. At a recent medical talk I attended, one of the doctors stated that "Medicine is an art". I've heard that said by many doctors, probably the better ones.

But, can there be a list that tells us exactly what to do to prevent disease? Not right now, but I'd like to think there will be.

Atopic Girl's Week Off

I am moving - physically, not social media-ly - so, the blog is on hold for the week. I will return as scheduled on Monday, September 24th. I will remain a bit quieter on Twitter this week, but if you tweet me I will reply. Same goes for email. If you're reading this and thinking, I wonder if AtopicGirl plans to cover , there's only one way to find out. Email me or leave a comment below.