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A lesson from A CyberBully, Change.ORg and 1,814 People from All over The World

2/18/2015

Yesterday my friend Reed showed me this page on Facebook. It is a page that mocked people with food allergies saying that food allergies were fake. They posted pictures of people getting allergy tested saying it was herpes, posts saying allergic people should stab Epipens in their brain, posts saying that food allergic people were making up allergies for attention and that we were all liars. After seeing the page I was outraged and I reported it.

Shortly after the report to Facebook, I received the following notification:

Outraged that Facebook failed to remove a page that promoted cyber bullying, I texted Reed and we decided we were going to make sure the page came down. As teenagers living in a technology filled world, we decided to do what seemed natural so we started a petition on change.org.

Then, Reed and I went to the source of the problem--Facebook. We shared it on every food allergy group we could find, along with our own timelines. And within minutes we had an amazing response. My friends as well as Reed's friends started posting it to their timelines and sharing it with their friends. Within an hour we had over 250 supporters, people from all over the globe and 6 hours later, we had 1,814 supporters. Reed and I were both humbled and amazed.

Around 11:30pm EST (6 hours later), the page was gone and we were able to declare victory. Pressing the victory button was one of the best feelings!

The thing is though, the lessons from this page run deeper than just a victory button. I have learned that food allergy bullying isn't just limited to the school bus or a sports team--it can be found anywhere. The more important lesson though is that the food allergy community is extremely strong. Every single one of the 1,814 signatures represented a different experience with food allergies and every single one of the 1,814 signatures made a difference.

If in 6 hours our petition could reach that many people, just imagine the impact we can have in a lifetime. You are never too young or too old to make a difference! Don't be afraid to use your voice and stand up for what is right because nothing will change if you don't!

If you are a victim of bullying and need people who "get it" there are lots of food allergy support groups on Facebook filled with people from the food allergy community who understand. We also know that bullying can be life threatening just like food allergies. If you or someone you know is being bullied and needs help please visit this page to find some helpful resources! To view the petition, click here.

Update: 2/20/15

Unfortunately, as many of us were sad to learn, the "Your Allergies are Bulls#$t" page went back up Wednesday (2/18/15) around noon. Luckily though it was back down again around midnight. Within the last few days we have learned from multiple anonymous sources that the page was made by a group to teenage girls who had made it to directly target a few girls from their school. They probably never intended that the petition would gain so many signatures or that people from the food allergy community would have stood up the way they did. While the petition closed with over 2,500 signatures, many adults in the food allergy community felt as though it was a waste of time and they didn't feel like it was worth the energy to take down a page with only 200 likes. Reed and I felt that targeting one person was one too many which is why we felt that the risk of bringing them more attention was worth it to not only the girls being targeted by name that they have a whole community standing behind them but to teach the admins that bullying is never ok. Once again, thanks for the support! We hope the page is gone for good!

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Helping A Food Allergy Friend

2/16/2015

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When I first saw this picture I laughed because it capture's my friend and I perfectly. I am like the girl and she is like the boy. I myself am allergic to a long list of things and she is allergic to chocolate. When I first heard about her allergy, I couldn't really imagine not being able to eat chocolate would be that detrimental, but I was wrong...chocolate seems to be in a lot of foods that I never would have thought about.

I consider myself to be a master substituter. I can make ketchup tomato sauce and salsa without tomatoes, I can make pizza without cheese, tomato sauce or wheat crust, I can make asian ginger dressing without soy sauce, I can make eggs out of flax seed. The one thing I never was able to do though was make chocolate out of chocolate. Knowing how excited my friend gets when I make something allergen free for myself, I couldn't wait to see her expression when I make her a substitution for chocolate that was safe for her to eat.

My journey to making my friend safe chocolate started with a routine trip to Whole Foods for some rice protein powder and some safe bullion cubes. As I was rounding the protein powder isle, I came upon chocolate free chocolate that was made from carob. I instantly knew I was going to buy it for my friend. The thing was though, it was just carob chips and I'm the kind of person who goes big or goes home, so I picked up some mini cupcake liners too because I was determined to make her Lily's Carob Cups (instead of Reese's Peanut Butter Cups). I quickly paid and headed back to campus.

Back in my apartment, I started by melting the carob--which was easier said then done. The carob didn't really melt like normal chocolate, rather it was more of like melting hard candy and was stringy when pulled. I got it to the point though where I was able to manipulate it enough to scoop it into the little muffin pans, add some peanut butter (which I am oddly enough not allergic to) and then add some of the melted chocolate on top. They weren't Reese's quality, but they were made with love which is just as important.

After they cooled, I was able to pop them out of the muffin pan, only to notice they were pretty hard. I placed them in the refrigerator to keep them from melting (not that they would have but I was just being safe) and went to bed. The next morning, I presented my friend with the container of carob cups at breakfast. I didn't get the reaction I was expecting--she didn't jump up and down or run to hug me, instead she told me she probably wasn't going to like them because of the chocolate taste. Semi-reluctantly she tried one, and ended up really liking it.

I was really happy she ended up liking her cups. Today, a week later, she returned the container to me which was empty. The fact of the matter is, one allergy to something as weird as chocolate or multiple allergies they are difficult. I never forget the people who have gone out of the way to insure I have a safe substitute and I am glad I was able to be that person for my friend!

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Refrigerator diaries

2/15/2015

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This morning, like every other snowy weekend morning, I woke up to the snow plows attempting to clear our parking lot as they beeped and scraped away. I reluctantly dragged myself into the kitchen hungry for some breakfast. When I opened the refrigerator, the light was off. It felt a little warm but the ice in my freezer was still frozen so I decided for the moment, it would be ok and turn back on eventually. Attempting to ignore my refrigerator dilemma, I decided I would eat my orange, which seemed the normal coldness and catch up on the previous night's episode of undercover boss.

After the episode, I opened the refrigerator back up and the light was still off so I did what I thought was necessary, I called Panther Central (Pitt's go to office for every day living needs). When they answered I quickly explained that my refrigerator was broken and I was requesting someone to come an fix it. In my mind, my broken refrigerator seemed like an emergency. Because of my food allergies I can only eat what I prepare and my entire week's nourishment is in that refrigerator so having it be non-functional is a lot more detrimental to me then the average college student who may only have a few boxes of pizza rolls in their refrigerator. The guy at Panther Central though didn't see my side of the story. He told me it wasn't an emergency and since it was Sunday, the one maintenance guy on staff was busy. He told me to file a report online and that someone would be by to fix my refrigerator by Wednesday.

Frustrated, I called the one guy I know who can fix just about anything--my dad. I had already pulled the refrigerator out from the wall and tried plugging the plug into the other half of the outlet (there was no difference). He suggested plugging in a lamp to see if the outlet was functional. I quickly grabbed a lamp and sure enough, it didn't light. With the help of a surge protector, and my dad, I was able to plug the refrigerator into a functional outlet and get it working again.

My refrigerator was working again, but it gave me just enough panic to make me think what would happen if the refrigerator actually was bad and I had to wait days to get it fixed? At home, we would just put the food in our garage fridge or on the screen porch but at Pitt I don't have any of those options. To be honest, what I would probably do is take my big blue travel cooler and stuff it with the most perishable foods like my meat. My big blue cooler can keep things cold for 4 days. It wouldn't be ideal but it would work.

As I go though college and life in general, situations come up that I never would have thought would happen; a bum outlet, having butter wiped across my face accidentally, being forced into a small room by a teacher with my allergens which were airborne, getting kissed on the lips by my 5-year-old cousin and having an anaphylactic reaction. The list goes on an on. Last week I had the pleasure of getting to hear from the CEO of the American Red Cross--and organization that focuses on spending time preparing for disasters people hope will never happen. She left us with the message that one of the most important things we can do as leaders (it was at a leadership summit) is to be prepared for the unexpected.

As we grow up and start to accept more and more of the responsibility for our own health, it is important we prepare for the unexpected whether it be bringing extra food on vacation incase your flight is delayed or just carrying your epinephrine because the the American Red Cross would say; you never know when a disaster will strike.

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Should We Be Worried?

2/12/2015

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Meet Evzio, Auvi-Qs first cousin. Evzio has inherited many thing's from it's cousin including it's voice, it's size and it's shape. What it didn't inherit though, was the medicine. If you look closely at the bottom of Evzio, you will see "USE FOR OPIOID EMERGENCIES". The Evzio contains narcan not epinephrine. Narcan is a medicine that knocks the opioids off of the receptors in the brain and can reverse the high someone feels with heroin, as well as the dangerous side effects of a high such as decreased consciousness and decreased respiratory effort. Regardless of the use, both epinephrine and narcan are important medicines that are being used to help people with two very prevalent diseases in our country--opioid addiction and anaphylaxis. Because narcan has saved so many lives, Pennsylvania recently updated their EMS protocols to allow EMTS to give epinephrine. That being said, the real benefit of the Evizio will be if family members of people at risk for opioid overdoses have the Evzio at their home. Because of that, there has been a big push to get the Evzio in drug stores as an over the counter medication all over the country. So does this matter for food allergic people?

To date before the Evzio, epinephrine was the only medication to come in an auto injector form. Glucagon comes in a semi auto-injector form but requires the use of a preloaded syringe to be added to a preloaded vial to activate the medication and then the user must draw up the glucagon into the syringe and inject it manually. My point is, saying auto-injector often makes people think of an epinephrine auto-injector. With the Evzio making it's debut, I think the most important thing is that food allergic people are aware of the new auto-injector and what it contains. Once it makes its way onto shelves the last thing we need people doing it is buying it because they think it is epinephrine. If you are having an anaphylactic reaction and someone tries to give you the Evzio, stop them! Also, don't be afraid to educate people on the difference. The truth is, the medicine in the Evzio saves a lot of lives just like the Auvi-Q, the more people who know how to give both, the more effective they will be and the more lives they can save.

To learn more about the Evzio, click here.

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Which Allergy is Worse?

2/7/2015

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The other day I was browsing through one of my favorite websites, The Mighty (great feel good bedtime reading) when I came across this article. The mighty is a website that compiles articles and blog posts from different blogs that celebrate "mighty" people. In this particular article though, the author was talking about when she didn't feel welcome in an autism support group. She was upset because parents thought she didn't know the struggles they went though since her kid is high functioning autistic and not low functioning like their children are. The author writes, "One group says, you aren’t autistic enough to be here, you don’t know our struggles. No I don’t. But, you don’t know our struggles, either. I mean this on the human level. How many of us know what it is like to walk in another’s shoes? None. Yes, my son is verbal. Yes, my son is gifted. But, you don’t see his ulcers from the anxiety he holds inside. You don’t see him when he has spent his day struggling to contain stims. You don’t see him when he’s sad because he feels as if he has no friends. As humans, we all want love and understanding. Because I speak of Asperger syndrome, it doesn’t mean I don’t want care for the autism spectrum at large. I do. I speak of what I know. Just as someone who writes about breast cancer doesn’t seek to diminish leukemia. We’re all doing our best to navigate this world and form community."

After reading this powerful article, I read a blog post on another food allergy website that was posted on twitter asking viewers to state if it was worse to have a peanut allergy or a tree nut allergy. Some said tree nut, others said peanut. I didn't understand. You see the difficulty of food allergies that makes awareness difficult is that food allergies are not a disorder like type 1 diabetes--where care is basically the same for every diabetic individual. What is safe for one food allergic person can kill another, while one precaution may be sufficient for one food allergic individual, it may not be for another. You see, food allergies are more like autism spectrum disorder then diabetes--they are a spectrum, in fact they are sort of like the image below.

Let me explain, the x-axis (the horizontal line) is number of allergies ranging from one allergy (such as peanuts) to being allergic to virtually everything. Most food allergic people will fall somewhere on that spectrum. The y-axis (the vertical line) is allergen severity. On the bottom there are people with mild food allergies where as the top is airborne anaphylactic. Again, food allergic individuals will fall somewhere on the spectrum. Most people upon first glance would probably assume that people in quadrant 1 (being severely allergic to a lot of foods) have it much worse than people in quadrant 3 (being mildly allergic to one or two foods). The truth is though, that isn't necessarily the case. At every number of allergen and level of sensitivity comes different challenges. For example, I am anaphylactically allergic to so many foods that it makes it unsafe and impossible to eat in a restaurant, so I bring all my own food out to eat. While I deal with the challenge of having to bring my own food everywhere, I avoid the challenge of trying to safely order food at a restaurant that someone who is mildly (or severely) allergic to one food may face. In my opinion, one allergy isn't worse than any other.

Living with food allergies is tough, and while the basic notion of having a food allergy is what relates us is important, it is also important to keep in mind that no food allergic person will face the same challenges as another. Our job, as members of the food allergic community is to lift each other up, offer words of advice, but should never be to tell another that their food allergy isn't severe enough or that they don't know the challenges of living with a food allergy. So how would I answer the question of whether peanut allergies are worse than tree nut allergies? I would say they are equal. They both bring their own challenges and their own advantages so it is impossible to say whether one is worse than the other.

What do you guys think?

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A lesson from A CyberBully, Change.ORg and 1,814 People from All over The World

Update: 2/20/15

Helping A Food Allergy Friend

Refrigerator diaries

Should We Be Worried?

Which Allergy is Worse?

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