A Food Allergy Advocacy Pep Talk

Photo courtesy of KeeleyMcGuire.com

My heart is heavy and full of emotions as I read the plethora of stories surrounding the EpiPen scandal. Families paying skyrocketing costs for necessary medicine and a CEO who seems out of touch with the issue. I'm blessed that I don't need one to treat my Celiac Disease, as it is an autoimmune disease and not an allergy. However, I know other kids and adults who need these every day. My husband is a teacher and we are keenly aware of how vital these medicines are. Our hearts break with them.

I'm so impressed by the number of voices who have spoken on this issue. I'm equally impressed that the general public is listening and seems to empathize with the situation. When the food allergy and Celiac Disease community is in crisis, this is when our best side can show. We can be a voice of truth. A voice of calm reason. A voice that can take a "dollars and cents" story and put it into a human example of real struggle.

We are a community. There are non-profits that have been leading change, to be a louder voice when our's seems so small. Some of these non-profits have come under fire. Concerned parents have voiced their frustration, sometimes with harsh language, stating they feel non-profits like FARE haven't been working in their best interests. I urge people before abandoning ship and saying nasty things to judge "a tree by its fruit" as it were. I have seen FARE do some amazing advocacy and bring about change.

I do understand the frustration though. In the Celiac community it seems we've had similar concerns over where a non-profit's loyalty lies. Concerns with Cheerios and gluten-removed beers have caused some to attack those they disagree with. It's caused division among a group who is supposed to be working towards the same goal. Celiac Awareness. While I will confess that I do not contribute financially to all of the Celiac Disease non-profits, I support their missions and share their achievements. We are stronger together.

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We need a community. The rest of the world doesn't treat us with grace. When I read this piece by Lianne Mandelbaum on Huffington Post, my heart sunk to my stomach. Our health needs aren't respected. Lay people tell us our diseases aren't real. Celebrities make fun of us on ads and on television. Our young children are bullied at school over a disease they did not choose.

I guess that's why I urge people to get involved with a support group. We need support. More importantly, we NEED TO BE SUPPORT. Celiac support groups across the country are shutting down. People get the answers they seek at a meeting and never return. People assume they can find all the "factual" information they need on the internet. And then we end up with people self-diagnosing. And we end up with people cheating on their diets and making the rest of us look bad. And we end up with people sharing inaccurate information.

Those newly diagnosed with Celiac Disease need us to be there with accurate, fact based information. Those who are yet undiagnosed need us to push for increased awareness of symptoms and improved diagnosis rates. We all need to support investments for better treatments. We need to work together, because it's too hard on our own. We need to overcome division. To quote Kid President, "If life is a game aren't we all on the same team? I'm on your team. You're on my team. If' we're all on the same team, let's start acting like it."

Let's dream big, keep pressing for an accurate diagnosis, better treatment of all whose lives are at risk because of the food around them. Let's give the (gluten-free and food allergy) world a reason to dance.

What are ways that you advocate for the Celiac Disease and Food Allergy communities?