Drawing out anaphylaxis: a local woman’s stride to make life with food allergies better
Many children’s first birthday parties end in fistfuls of cake, melted ice cream, and lots of photos. For one local Richmonder, her child’s first birthday ended with an ambulance.
Many children’s first birthday parties end in fistfuls of cake, melted ice cream, and lots of photos. For one local Richmonder, her child’s first birthday ended with an ambulance. He had eaten a cupcake, had a severe allergic reaction and she didn’t know what was happening. Luckily one of her girlfriends was a nurse, recognized the signs, and called 911.
That visit ended with sedation, an IV, and a declaration of a life-threatening allergy. For Tiffany Glass Ferreira’s son, the answer: no eggs, wheat, milk, soy, or nuts. “At 1 year old! And he didn’t even have any teeth!” she exclaims. So Ferreira launched a campaign to educate herself, her family, and others.
An estimated 72,000 children and 241,000 adults in Virginia are affected by food allergies, and hundreds of Americans die each year from food induced anaphylaxis (an extreme allergic reaction).
Affecting 3% of children under the age of 18 years and about 4% percent of adults in the United States, anaphylaxis can be difficult for those who don’t have allergies to understand the severity. “Even our family said, ‘you’re just overprotective,’ and ‘you’re making it worse by not giving it [allergens] to him.’,” she says. Both an artist and teacher, Tiffany naturally turned to art to express her frustration and anger.
“That’s when I started drawing cartoons,” she says. She won’t say just how much is a direct reflection of what her friends and family members say to her, but says, “Hey, this is a really crazy thing you said, and when you see it in a cartoon it’s kind of funny.”
She started drawing the food allergy-themed cartoons about six months ago. She begins on paper and takes a photo with her iPhone, which is about as high tech as she has time for. You can view more on her site, www.foodallergyfun.blogspot.com
Her son is four now. He’s seen four pediatricians and three allergists, and has participated in elimination diets, blood tests, and multiple follow ups. “It’s a moving target,” reiterates Ferreira. Now he is only allergic to eggs, milk, and tree nuts, specifically cashews, which are most often packaged in factories that make other nuts. Peanuts are different, however, since they are legumes.
He goes to school with an EpiPen (an epinephrine autoinjector) and a note saying that, if he comes into contact with nuts, teachers must call 911 immediately and that his mother will meet him at the hospital. “It’s like a 10 minute window,” explains Ferreira of the response window for a severe reaction
It can be somewhat isolating. Her son didn’t go trick or treating; didn’t go to any kind of party last year or even any kind of celebration. Naturally, small children are inclined to go after any yummy-looking treats, and why would her son be different? The risk just wasn’t worth it. Over time, he’s become more aware of his allergies, because he’s had such a dramatic reaction. “If someone gives him a cookie, he’ll ask, ‘What are the ingredients? I’m allergic to nuts’,” says Ferreira.
There’s an overall health and cost angle here too. “Recently I got an ironic (and too common) ‘Awww, poor kid.’ response from a well meaning person when I pulled out my son’s packed lunch. Meanwhile, their kid was having 12oz of orange soda, chips dripping with nacho “cheese” and Dippin Dots.” That kid’s lunch cost? $12.
She tells us about Yummy Lunch Ideas, a website with photos of healthy and colorful packed lunches. The boxes are geared mainly towards kids, but darn if they don’t look appetizing and fun for adults, too. Over 100 ideas are there, not one with Day-glo cheese.
Ferreira’s been commissioned to draw her comics for special events as well. She recently collaborated with the Virginia Museum of Fine Arts for a no-candy Easter Egg Hunt this spring, which was covered in several local press outlets. After months of talking, planning, and okaying eggs, trying to make it safe for everyone, she went to two different egg hunts that week: the allergy awareness one and a regular one where she just brought her own eggs. She made sure her children brought her all the eggs they found before opening them, and she just swapped them out with her own at the end. Turns out, that was probably easier, she admits.
Lewis Ginter and Maymont have contacted her about having food allergy safe events, but Ferreira cautions that most allergies are very specific, so there’s often no possible way to make it safe for everybody. It’s good to be aware so that parents can get the information they need to make better decisions, but there might not be an answer for all or most. The VMFA actually saved money, too. She’d love to get to the day where when she calls and asks, “What’s in the eggs?” that she’s not considered annoying.
A new initiative may help, at least for eating out. AllergyEats.com is an aggregator of restaurants that include user-posted ratings for allergy safety. It’s a burgeoning website, and not all the restaurants listed are rated yet, but Ferreira was heartened to see Belvidere at Broad at the top of the list.
She hopes that in 10 years when her children are older and the family wants to go out together there will be places to go that have an allergy-sympathetic chef. Most allergies aren’t expected to be outgrown. Currently, she brings food with her whenever she has to go someplace with her children. It’s hard for her to trust a restaurant. “I waited a lot of tables. I know how busy it is, and how many hands are on the food. It doesn’t seem reliable when it’s life threatening.”
For that reason, she’s excited about the Allergy Eats site. “It’s just the tip of the iceberg. If there are 25 restaurants on there now…” she trails off, her silence intimating her hope for the future.
“If a person with a food allergy comes in to the restaurant, and they feel safe, and they get what they want, it’s an instant loyal customer. Or the opposite, that’s the tipping point where the restaurant becomes unsafe. It’s the ultimate bad press for that entire audience,” she points out. Another local woman, Loralyn Mears, recently launched her own business, Clear Allergy Labels, making creative and clear allergy holders and inserts. Not a mom, but a woman with her own individual dietary limitations, she also saw the struggles of her niece and nephew. Mears was inspired after her own injury when people were bringing her casseroles, and she couldn’t eat any of them.
“For a lot of us, it’s such a completely different lifestyle, but not an optional lifestyle. Eating out in restaurants is such an optional thing,” offers Ferreira. She feels a little helpless at the speed in which allergy awareness is moving. Just recently, on a visit to the Pediatrician for a wellness visit, her son’s doctor asked her about The Food Allergy and Anaphylaxis Management Act, a 50-page document that was signed into law by President Obama in January of this year. “Have you read it?” she asks me. “This is the conversation I’m having with my Pediatrician, who has a medical degree. That’s what’s frustrating.”
— ∮∮∮ —
May 8-14 was the 14th Annual Food Allergy Awareness Week. 30 states issued proclamations or resolutions of food allergy awareness. Here’s Virginia’s
For more information: The Food Allergy Anaphylaxis Network (FAAN), located in Fairfax, VA.
-
Recommend this
on Facebook -
Report an error
-
Subscribe to our
Weekly Digest
Holly Gordon
Holly Gordon spends her days working with Richmond’s hearty nonprofit community and her nights singing in a community chorus. She loves her feminist book club, and is always distracted by shiny things.
Notice: Comments that are not conducive to an interesting and thoughtful conversation may be removed at the editor’s discretion.
Great article and wonderful service! I am going to share this info with all of my patients!
Great job, Holly! Being lactose intolerant, I understand a little bit of what she has to go through. My favorite response from people is “but can’t you just have a little?”
Oh, wow – convergence in the best way! Holly writing about my friends! CLEAR Allergy Labels is a great little start-up, Ellwood’s is selling the labels now and I think Whole Foods & Fresh Market will be soon, too.
I’m lucky, I can eat anything. My sis-in-law, niece, and nephew, however, have Epi-pen-necessary food allergies, and have to be hypervigilant about what’s on their plates. CLEAR is a great way to take fear off your buffet table. No more food allergy roulette ;)
THANK YOU Holly Gordon and RVA News for helping raise awareness and compassion for families with food allergies. I’m reminded how lucky we are to live in Richmond, where the community rises up to support parents like us.
At first, I did feel quite confused, and isolated, but I think my attitude has always been positive. My cartoons are light hearted, and not (usually) based on real people. It’s my ultimate goal to teach my kids to be safe and happy. We’ve learned a lot in 3 short years, but my story is too common among food allergy families I meet.
Actually, my son’s first reaction didn’t end in the ER. Paramedics were called to the scene and stabilized him at our home with Bynadryl. Two years later, we learned tests had missed a specific tree nut (cashew), and he suffered a severe reaction, landing him in the ER. These were two separate events.
Now, I consider us VERY lucky that the second event happened – right before he started preschool. He was old enough to be aware of his condition, and how to prevent it from happening again.
Also, it’s true my son hasn’t participated in a lot of typical childhood celebrations. We skipped trick-or-treating, birthday parties with friends who we didn’t want to inconvenience and we’ve never let him eat in a restaurant. But, we have fun. He doesn’t live in a bubble, we just have to be careful. Now that he’s a little older (and his younger sister is walking and talking too), we venture out more.
It’s also easier to be mobile now that I’m cooking better ~ although I won’t say well, yet. Learning to cook without eggs, milk, wheat, soy, nuts and most processed food is a great challenge ~ but for a working mom who LOVES pizza, it’s a major challenge (and don’t tell me Vegan Cheese tastes like Mozzarella, or I’ll hurt you.)
Thank goodness for Twitter and Facebook, with an instant network of resources we couldn’t live without.
And THANK YOU to Holly Gordon and RVA News for caring about food allergies and our perspective.
Holly (and Tiffany) – I’m grateful that you’re each making the efforts that you are to help build awareness of food allergies, as well as educate people on which solutions are out there. Holly, thank-you so much for writing this story and describing my desire to help kids (and others!) with allergies using the simplest of all solutions – clear labels! :)
What a fantastic read! Thankyou for sharing.
The cartoons are brilliant.
I have a 6 yr old with a fish allergy & a 16 mth old with a dairy allergy. My 6 yr old was originally diagnosed with egg & dairy which she has grown out of. Her fish allergy was diagnosed at 4 yrs old & we have been told fish is often a life long allergy.
What a roller coaster ride it is for families of kids with allergies. We also deal with food intolerances in both our children. It is a full time job. The work involved in keeping a safe, nutritious food supply for them & monitoring their environment is an unbelievable task. It is very hard to understand for people who don’t live with it themselves.
The more of us who share our experiences the better.
We have a website dedicated to sharing info with other parents. ourfoodfight.net. I would never have thought my life woyuld go in this direction but I am passionate about being an advocate for the cause.