To Mom: My First Allergy Advocate

Today is an incredibly special day for so many reasons.  Not only is today Mother’s Day, but it’s also the beginning of Food Allergy Awareness Week, and I think that these two events go hand in hand. As a child who grew up with food allergies, a big part of my “growing up” dealt with transferring allergy management from my mom to me.  Now that I am older, I can really respect the amount of time and effort my mom went through to educate other parents, carry around wipes, Benedryl, and epinephrine, pack me safe treats, hand make each and every birthday cake, and never see it as a burden.  She made sure that I never felt different, excluded, or limited because of my allergies, and for that I am eternally grateful.  Her confidence and planning allowed me to experience so many cool things, and I have so much respect for all that she did to keep me safe.  But I think one of the best feelings for a mom is being able to see her child speak up for her allergies, and I can only hope that my mom can feel that pride as I tackle each experience life throws me.

While I am incredibly thankful for all that my mother has done for me in regards to keeping me safe with my allergies, I know that is not up to her and other allergy parents to keep the world informed and tolerant towards allergies, and that’s where Food Allergy Awareness Week comes in. Food Allergy Awareness Week is a campaign started by FARE’s predecessor, FAAN (Food Allergy and Anaphylaxis Network), in 1998 to educate others about the severity and prevalence of food allergies in our world.  

As a refresher, food allergies are caused by the IgE antibodies in a person’s blood reacting to a particular food protein as if it were a toxin and signaling a release of histamines.  Anaphylaxis is caused by a more intensive immune response, where your body releases chemicals that cause an intense drop in blood pressure, restricted airways, full body hives/welts, and other symptoms that when combined are life-threatening. There is currently no cure for food allergies, but research is being done to see what strategies we can take to reduce the likelihood of reactions for those with a diagnosed allergy.   People with food allergies must ensure that they are very cautious and avoid exposure to their allergen to prevent anaphylaxis. 

This week is a great week to learn about the causes of allergies, how you can help those with allergies, and to get involved with activism, whether it be through petitioning your law makers for increased access to epinephrine, donating to allergy research by signing up for a Hometown Heroes Walk in your hometown, or simply by wearing Teal on Thursday May 16th for #TealTakeover.  And if you have any questions, be sure to reach out to me on Facebook or in the comments section below. Happy Holidays!

Food Allergies and Food Insecurity

Imagine living in a world where each meal you eat might be your only meal for the next two days.  Where you must scavenge for anything to get you by so that you can have some slim chance to be able to beat the cycle of poverty to make life better for you and your family.  At the beginning of the month, I got to know people who experienced this world every day.

During my spring break I had the opportunity to be a student leader for Catholic Campus Ministry’s trip to Camden, NJ.  While in Camden, we worked with DeSales Service Works, a project of the Oblates of St. Francis de Sales that provides visitors opportunities for faith-driven community service.  Throughout the week, we volunteered with a lot of different organizations, including St. Joseph’s House, The Last Stop, Holy Name School, the Sandwich Ministry, and Hopeworks.  We also participated in some local park clean-up and gardening for the community.  We had exposure to all different kinds of people and life experiences as we engaged with the Camden locals in our projects to help the community. 

This week was incredibly eye-opening as we learned more about the privileges that we did not even realize that we had.  On one day after cleaning and sorting at St. Joseph’s House homeless shelter, we had a guided reflection about being homeless and I realized how little control people have on every aspect of their life when they are homeless.  Throughout my life, I have had the ability to chose what I eat and to read the ingredients of most foods before I eat them, but for the people who are homeless, they just have to take what they can get.  This also goes for finding where they can sleep or finding jobs.  These people have limited carrying capacity in their arms, and can only own what they can carry, so even if they get a job interview, it can be hard to get a job if they lack the professional clothing to help them out.  And even if a shelter resident is able to get a job and stop relying on service organizations for sustenance, it is hard to provide for your family without first repaying all of your personal debts.  Camden is a well-known food dessert with no large grocery stores within the city limit, and most residents rely on bodegas for most of their food.  On the first night of our trip, our initial group of five people had the challenge to buy ingredients for dinner for our group of six at the corner bodega with only $4.  We made ourselves a can of black beans, a can of carrots, and a bag of rice.  But what was only a little fun challenge for us is the life experience of so many city-dwellers who have limited access to fresh foods.

Our Bodega Dinner

Having my background with food allergy knowledge, it was difficult for me when we were distributing food because there was so little information about the food we served.  The soup kitchen at St. Joseph’s Place and the cathedral’s Sandwich Ministry worked solely on donations. These donated casseroles, soups, and desserts had no labels on them and when people asked us what was in the food, we had no real answers except for what we could tell from looking at it (“this is ham and beans”, “this is chili with some meat” “this is pasta with cheese and meat” “this is a brownie”).  The most immediate difficulty I saw was for the population at the shelter who did not eat pork.  Often, the meat options in dishes like chili or pasta sauces were indiscernible ground meat, and so we had to offer them the vegetarian options which was just pasta with red sauce and canned green beans.  This meal is so low in protein and it would be hard to sustain yourself on that for several weeks on end.  And for a lot of people who have avoided pork for religious regions for most of their life, if they accidentally eat pork products, their bodies are so unused to it that they will get sick even if they desperately needed to eat that meal.  And if these pork-free people struggle so much, I can only imagine this situation for anyone with food allergies.  As the population in this country with food allergies grows, the chance that some of these people may end up having to rely on services that provide free meals will increase as well, and we need to prepare to serve this population with the dignity that they deserve.  It already takes so much effort to get people to donate food that if we were to require all donated foods to go through an intensive labeling process, even more people might go hungry. 

After my experiences with this trip, I opened up my email to see that the sign-up sheet for 2019 FARE Teen Advisory Group projects was open, and I am so excited to be participating in a project that addresses food insecurity for people with food allergies.  With the experiences that I have gained over my trip, I feel as though I will be able to help give my team the reality check needed to make sure that our initiatives for food banks will be sustainable after we give them our presentations.  I can’t wait to continue the good work from my trip through this new project and if anyone has any ideas for ways that we can improve food labeling and allergy-friendliness of food banks and soup kitchens, be sure to comment below or on my Facebook page.

Women in Food Allergy Research

Yesterday, March 8th, was International Women’s Day.  This day has been in existence since 1911 to celebrate the social, economic, cultural, and political achievements of women.  I absolutely love this day because it provides me with an opportunity to read about a plethora of inspiring women yesterday as I came across their accomplishments on various social media platforms.  It was so awesome to see how many things in this world have been created due to the hard work of women everywhere.  As I read through these stories, I began to wonder about the impact that women have in the food allergy research community.  Luckily, March is Women’s History Month so I still have an excuse to do some brief research on the contributions that women make in the field of allergy research.  Today, you will get to learn about three amazing women in the allergy community.

The first woman I want to feature is Sandra Gawchik, DO, who has been my allergist for 18 years.  She is the recipient of the 2017 “Women in Allergy” Award presented by the American College of Allergy, Asthma, and Immunology.  This prestigious award is given to women who have “advanced the role of women in the field of allergy/immunology … or who has made a significant contribution to the specialty”.  She has been the president of the Pennsylvania Allergy and Asthma Association and the Philadelphia Allergy Society and is an active member of several other societies involving the advancement in medical practice for allergists.  She has conducted lots of research on asthma and seasonal allergy topics, such as sublingual immunotherapy to house dust mite allergy (1), latex allergy (2), growth and bone maturation of asthmatic children treated with inhaled corticosteroids (3), and many more topics.   I am so thankful that I have been able to experience her guidance and expertise as part of the successful management of my food allergies.   

Edda Fiebiger, PhD was the 2017 recipient of FARE’s New Investigator Award for her research in inhibiting the active enzymes during allergic reactions to improve outcomes during oral immunotherapy.  Along with being an assistant professor at Harvard Medical School, Dr. Fiebiger is also a researcher at Boston Children’s Hospital.  Her research is focused on understanding the mechanisms behind food allergies in the immune system of the gastrointestinal tract (4).  Some of her recently published research has investigated Soluble FceRI as a biomarker for IgE-mediated diseases (5), the mRNA patterns in Eosinophilic Esophagitis patients (6), and the functions of dendritic cell bound IgE in allergic patients (7).  Dr. Fiebriger’s innovative research will give the allergic community a new and stronger understanding of the mechanisms behind allergies so that we can get closer to a cure.

The final woman I want to feature in this post is Stephanie Eisenbarth, MD, PhD.  Dr. Eisenbarth was a recipient of FARE’s Mid-Career Investigator Award for her research in inherited predisposition to food allergy.  Dr. Eisenbarth is very busy at Yale University as an Associate Professor of Immunology, Associate Chair of Research in Laboratory Medicine, and Assistant Director of Clinical Pathology Residency.  Her lab studies T cell driven pathology, Dock8’s role in allergic immune response, and the role of IgA in mitigating food allergy.  Her diverse research looks at many aspects of the immune response and why it occurs for many different conditions including allergies, asthma, and vaccines.

The three women I learned about today are just a small group of amazing and influential women in STEM who are going to make their mark on the world.  Their research will be important in improving the lives of the 15 million Americans with food allergies, and the food allergy community cannot wait for their discoveries.  I hope that you all had an amazing International Women’s Day and that you are empowered to pursue your unique passions, despite any push backs you face!

Valentine’s Fun

Snow is on the ground and love is in the air! And that can only mean one thing- it’s Valentine’s Day! This greeting card holiday has become so much about food, but at the root of it, Valentine’s Day is all about celebrating the important relationships in your life, including friends and family.

This year, my roommate Lindsay and I decided to make some easy top-8 allergy friendly valentines treats for ourselves, and some completely food-free gifts from the dollar store for the rest of the people on our floor.

Strawberry Hearts

  1. Cut strawberries in half.

2. Melt a cup of safe chocolate chips with a teaspoon of safe oil. I recommend Enjoy Life’s top-8 free chocolate chips and canola oil for an allergy friendly version.

3. Dip the strawberries in chocolate.

My roommate, Lindsay dipping the strawberries in chocolate.

4. Enjoy!

For the floor

We went to the Dollar Store near our college and bought a pack of Star Wars valentines to give to everyone on our floor. We also got small packs of seasonal stickers to hand to our friends.

Food-free fun is a great way to be inclusive and safe on any holiday, and I hope your Valentine’s Day is the best one yet!

Reacting to my Year

2018 was a huge year for me in terms of personal growth and new life experiences. I overcame several obstacles with my allergies this year: managing my allergies at college, while doing weekly baking activities at summer camp, on several day trips, and for two whole weeks in China. And above all of these experiences, I even had the opportunity to speak at the FARECon Teen Summit.

No obstacle of 2018 will compare to my first anaphylactic reaction at college. For months I have thought about how I wanted to post about the incident, but I just didn’t have the courage. It didn’t feel right to talk about this mistake I made with my allergies on a space where I was dedicated to showing how fully you could live your life with being limited by your food allergies. But I realized that it is important to accept that in life, everything will not always be safe. There will come a day when you make a mistake as a person with food allergies. I hope that by sharing this story, others will understand what a moderate reaction looks like and why allergic people must take all the precautions that they do.

August 27th. It was 8:30 on the night before classes started, and I was eating a food that I didn’t read the label of when all the sudden I realized that it was crunchy. I checked the label and saw the word “walnut” in the ingredients list and was freaked out. I hadn’t had a reaction in 9 years and I could feel in my soul that although I only had one bite, I was in for a long night. I immediately went to student health even though I did not show many symptoms at the time. I had no visible skin symptoms but my throat and tongue felt like they were swelling up. They gave me benedryl and prednisone as an attempt to cure my mild reaction and sent me back to my dorm room. At this point it was around 10pm. I tried to go to sleep that night at around 11pm but things just didn’t feel right inside of me. At 1am, I decided to get out of bed because my skin felt like it was on fire and I wasn’t sleeping well. I used my phone flashlight to look at myself and discovered that my normal pale skin was replaced by bright red hives and welts. These symptoms plus the swelling of my throat and tingly lips from earlier caused me to take my roommate back with me to student health. There, they told me that they couldn’t help me and that if I wanted to self-inject my epinephrine, they would call the ambulance. I decided that that route would be the safest. I got to Christiana Hospital at around 2am and then waited in a hospital bed in the hallway for nearly three hours before they finally brought me to a room. As the epinephrine worked its magic, my skin became warm and speckled as the hives faded. They monitored my vitals and told me that I would be fine. By 4:45, I was finally moved to my own room. They kept me for another hour to ensure that I was safe for a total of 4 hours after receiving the epinephrine. I was discharged at 6am and walked into the lobby where I saw another UD student who had been discharged 30 minutes ago and was told that the UD police should have been there to pick us up . After waiting for 30 minutes for the UD Police escort back to campus, my roommate called an Uber for us to get back, since that would be more reliable. We got back on campus at 7am and I made it to my 8am class on time despite the wildest all-nighter I could have ever imagined. Throughout the rest of the day, the buzz from the epinephrine diminished and eventually my lack of sleep caught up with me. I made it through all of my classes and I fell asleep directly after my 8pm choir call-back that night, and I got more sleep than I would get for the rest of my busy semester.

Allergic reactions are one of the scariest things you can endure. Their impact changes you both physically and mentally. If you’ve ever taken a “True Colors” personality test, you’d know that “Gold” people like having control and being organized. As someone who fits this “Gold” personality, I had the worst time with the idea that I couldn’t control what was going on in my body. Sure I took care of myself as soon as I recognized my mistakes. But I didn’t know that my reaction would be bi-phasic and that I would get worse in two hours. Sure I self-injected my Auvi-Q, but as I laid there on the bed at student health waiting for the ambulance to arrive and my symptoms got worse and worse, my fear of impending doom took my emotions on a trip. I had done all that I could but it was not enough. It is incredibly taxing to be stuck hoping that your symptoms would end and not being able to control what was going to happen to you. The lack of control and predictability is something that I never thought about when I thought about having allergic reactions. I am so lucky that I was able to be stabilized by the epinephrine auto-injector and that I did not need to be hospitalized with IV fluids, but it was still a serious and scary way to start my semester. After I got back into my normal routine, eating became scarier than it had ever been. Getting myself to trust that other people would be able to keep me safe and give me allergen-free food was really stressful. What if they made a mistake? What if I made another mistake? I had to learn to look past these anxious worries and bring myself back to the mindset that I was going to be served safe food.

Looking into 2019, I hope that this year brings me more opportunities to grow. With my new year’s resolution of being more positive and intentional about everything I do, I hope to avoid as many risky situations for my allergies while still giving myself opportunities to challenge myself in other aspects of life. While I am home for Winter Break, I also hope to create more content for my YouTube channel and stay more active on my blog. Good luck to all of you for the upcoming year!