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Food Allergy Awareness Week! Things I’d Like People to Know… And a Little Dr. Seuss

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It’s almost here, food allergy awareness week 2018! The official dates for this year are May 13-19.

I’m currently sitting in my office looking at a recent picture of my daughter and me at our state capitol with the governor to advocate for food allergy awareness. If you’ve followed Allergy Amulet for a while, you know I’m a passionate food allergy mom!

One of the greatest things about food allergy awareness week is that it’s a conversation starter. I LOVE that statistics are being shared left and right to paint the picture of how many people are affected! Heck, even buildings around the country are “turning teal” in recognition!

However, it’s important that the conversation not just be about how MANY people are affected, but HOW they are affected. So in the spirit of awareness and conversation, I wanted to share 10 things I’d like other parents to understand about food allergies!

1.    Food allergies are not a choice. We don’t know why our family has food allergies, and we have to manage them diligently every day. Please don’t feel sorry for us, help advocate for us!

2.    Food allergies can be life threatening and they’re a serious health issue, not simply an inconvenience—trace amounts of a food allergy protein can be deadly.

3.   Food allergies require planning. We can’t often join spur-of-the-moment outings, so please make sure to give us a heads up so we can plan ahead!

4.    If we ask questions about your food multiple times, it’s not because we don’t trust you, it’s because there’s no room for error. It’s not personal, it’s precautionary.

5.   Food allergies can be draining—mentally, emotionally, and financially. We can’t let our guard down and our vigilance level is always in “on” mode. We want to experience the same events and activities as everyone else, but it’s not always easy.

6.   We’re not germ freaks if we ask you to wash your hands after eating, or if you see us wiping down an airplane seat with disinfectant wipes. It’s simply that we are trying to keep the risk of allergen exposure to a minimum.

7.    Activities don’t have to involve food to be fun! If you know that someone with food allergies will be joining an activity or celebration that you’re organizing, try to be mindful of the foods they avoid (and give them a heads up if their allergen will be present so they can plan accordingly)!  

8.    Always feel free to ask questions. We will never get annoyed if you ask us a million questions about our allergies. Education is the first step to understanding!

9.   We’re just parents doing what we have to do to keep our kids safe. Please realize we’re not trying to inconvenience you, and that we’d do the same for your child!

10.  It helps to have a village of support so you don’t feel like you’re isolated on an island—if you are part of someone’s village, THANK YOU. It’s not an easy task!

Lastly, I leave you with some brilliant words from Dr. Seuss’s Horton Hears a Who. It seems appropriate for food allergy awareness week. ☺️

Don’t give up! I believe in you all!

A person’s a person, no matter how small!

And you very small persons will not have to die

If you make yourselves heard! So come on, now, and TRY!

 

The Mayor grabbed a tom-tom. He started to smack it.

And, all over Who-ville, they whooped up a racket.

They rattled tin kettles! They beat on brass pans,

On garbage pail tops and old cranberry cans!

They blew on bazookas and blasted great toots

On clarinets, oom-pahs and boom-pahs and flutes!

Great gusts of loud racket rang high through the air.

They rattled and shook the whole sky!

 

When they got to the top,

The lad cleared his throat and he shouted out, “Yopp!”

And that Yopp...

That one small, extra Yopp put it over!

Finally, at last! From that speck on that clover

Their voices were heard! They rang out clear and clean.

 

And the elephant smiled. “Do you see what I mean?”...

They’ve proved they ARE persons, no matter how small.

And their whole world was saved by the Smallest of ALL!

 

- Meg and the Allergy Amulet Team 

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Understanding More, Fearing Less

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“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”    – Marie Curie

Who better to listen to on the topic of fear than the first female scientist to win a Nobel Prize (twice!)? Curie had to overcome quite a few fears in the male-dominated science profession before winning those awards. She was also the daughter of a proud papa named Wladyslaw, a math and physics teacher (her mother died when she was ten), which is a nice segue to another proud papa: me. My name is David. I’m a 43-year-old corporate attorney, private equity and venture capital investor, and the father of three wonderful daughters. My daughter Caroline is not a scientist (yet), but like Curie, she confronts fear and hostile environments every day. She is severely allergic to peanuts and most tree nuts.  

As any parent of a child with a food allergy will attest, food outings are an exercise in fear. Even though my wife and I have no allergies, we experience this fear vicariously through Caroline daily. I can see the fear in Caroline’s eyes nearly every time we dine out. For a ten-year-old girl, this fear can be debilitating, frustrating, confusing, and embarrassing all at once. Caroline counts on us to always protect her, making us promise that she won’t get “hurt” when she eats out with our family. Caroline is good at math. Even at ten, she knows that getting it wrong even 0.1% of the time can be deadly. It is our very own David and Goliath story: my fragile young daughter against the fear of uncertainty. 

On a recent trip to our local ice cream parlor, we loudly (in keeping with custom) informed the teenage server of Caroline's peanut and tree nut allergies as we placed the orders for our three young daughters. The staff proceeded to assure us every precaution and make her ice cream cone in a separate, allergy-free area. These precautions always make me feel better, but the fear is constant, like white noise in the background.

First to receive her double-scoop cone was our eldest daughter, Ashley. Within seconds of handing her the cone I was startled to attention, "Dad, this tastes like peanut butter!" We didn't order a peanut butter cone for Ashley. Ashley has no food allergies, however, we never allow our other children to eat peanuts or tree nuts around Caroline. Family rule! I took a bite and sure enough, a strong flavor of peanut butter filled my mouth. Disappointed, we immediately informed one of the servers, who shrugged it off as if we had just informed her that she had forgotten to add green and red gummy bears to the cone. "Whoops, I guess we put the wrong thing in the order, sorry." I was stunned, but frankly, over the years I’ve grown accustomed to non-allergic parents, teachers, and servers acting like food allergies just aren’t a big deal. What if that server had accidentally given Caroline that cone? I clutched my daughter’s EpiPen case and shuddered to think what would have happened if she had been the one on the receiving end of that double-scoop chocolate cone. Uncertainty and fear gripped my insides. 

What’s a father to do? 

First, I make a point of frequenting stores and brands that promise nut-free facilities. The only “nut-free” bakery around is the next town over, but I think it’s worth the trip. I also support nut-free brands to ensure they stick around.

Second, I have spent the last five years of Caroline’s life trying to teach her to look out for herself. It’s a lesson I hope she will take with her when she is a teenager dining out with friends, and ultimately when she leaves our house and has to fend for herself. For my wife (Julie) and me, questions and doubts continually spin through our minds: Will she remember to carry her EpiPen at college? Will she know to diligently check food labels when we’re not around? Will she ever be too embarrassed to speak up about her food allergies when out with friends? To combat these concerns, we always try to make sure we’re helping her build the skills she needs to manage her food allergies solo.

One recent evening, while dining out at a local farm-to-table restaurant, I discovered half of a walnut in my nut-free pasta. While once again surprised and scared, it was a stark reminder of how easily cross-contact occurs. Enter Allergy Amulet, an early-stage technology company trying to create greater food transparency and help individuals with food allergies feel safer about the foods they eat. I believe that technology holds the key to helping her defeat her Goliath. That’s why Julie and I are proud investors in the company. 

Perhaps one day in the near future, my little wonder woman will not be brandishing a primitive sling-shot to slay the giant, but rather, an Amulet. Perhaps science will help her overcome her fears, and help her understand more, and fear less.

David would like to thank his wife Julie for her careful edits and contributions to this piece.  

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More Tools, More Problems? Food Allergies Since 1960

This guest post was written by Theresa MacPhail—assistant professor in the Science, Technology, and Society Program at Stevens Institute of Technology. 

Last December, I wrote a blog post about the early history of food allergies from the 1800s through the 1960-70s. In this installment, we’ll examine more recent food allergy chronicles, current treatments, and diagnosis debates. Despite advances in our understanding of the immune system, and promising developments in allergy-related technologies (like the Allergy Amulet), the lack of a cure or effective treatments for food allergies persists.

The Discovery of IgE

Immunotherapy treatments were first tested in animals, and then cautiously applied in clinical settings to treat both respiratory allergies and food allergies beginning in 1911. The risk of an accidental anaphylactic response was, and is, ever present. Much of the early allergy testing and treatment remained unchanged until the mid-1960s, when two separate research teams discovered immunoglobulin E, or IgE—a molecule that naturally forms in human blood.

IgE’s discovery led to a greater understanding of the inflammatory response that follows allergen exposure, sparking more research around the cause of allergic reactions. By 1975, the first commercially available and reliable blood test for IgE became available for clinical use. IgE testing quickly became a significant aid in allergy diagnosis, since an elevated presence of IgE levels in the blood often indicates a food allergy.

IgE has played an enormous role in subsequent allergy research, diagnosis, and treatment. However, while IgE tests provide information as to the likelihood of having a food allergy, 50-60% of IgE blood tests yield a “false positive” result, creating a great deal of uncertainty in diagnosis. IgE as an allergy biomarker is accordingly far from perfect.

Food Allergies - A Rising Prevalence?

If you follow the news or social media, or have a young child in the school system, it certainly seems that food allergies are on the rise. Although food allergy awareness has increased over the last decade and has become a more popular topic of conversation, the food allergy prevalence rate has been difficult to measure with confidence.

Figures on the national and global food allergy population are unsettled. This is largely because the numbers rely on multiple data sets collected across different methods and research groups. Official estimates place the figure at around 15 million. Adding to this confusion is the difficulty in confirming the presence of an allergy with current diagnostic tools (often IgE testing, discussed above). The majority of food allergy and food intolerance cases depend on self-reporting and sometimes self-diagnosis—and those numbers fluctuate greatly. A recent paper looking at multiple different allergy studies found that “[s]elf-reported prevalence of food allergy varied from 1.2% to 17% for milk, 0.2% to 7% for egg, 0% to 2% for peanuts and fish, 0% to 10% for shellfish, and 3% to 35% for [other foods].” A 2013 paper further suggested that “at least 1%–2% and up to 10% of the US population suffers from food allergies," which based its findings on "self-report, skin prick test (SPT), serum-specific IgE (sIgE), and oral food challenges (OFC).” These reports show that food allergy populations vary based on allergy type, reported severity, geographic region, study design, and testing method.

In short, with no easy and standardized way to diagnose food allergy cases, it is difficult to confirm and measure the perceived rise in the food allergy population.

The LEAP Study and the Future of Oral Immunotherapy

Perhaps the most significant study on food allergy in the last 50 years is the Learning Early About Peanut Allergy (LEAP) study by the Immune Tolerance Network. In this study, infants at a higher risk of developing a severe allergy to peanuts were randomly assigned to one of two groups: one that would avoid ingesting peanut-containing foods until age 5, and one that would consume a peanut-containing snack (~6 grams of peanut protein) with three or more meals per week until age 5. Of the children who avoided peanut, 17% developed a peanut allergy, compared to only 3% of the children in the control group. In a press release for the study, one of the researchers noted how for decades allergists have recommended that infants avoid consuming allergenic foods, and this study "suggests that this advice was incorrect and may have contributed to the rise in [] peanut and other food allergies.” Indeed, the LEAP study overturned decades of prior advice and shook the allergy research community. The study also gave credence to one of the oldest forms of allergy treatment: immunotherapy. 

After a decade of research, oral immunotherapy is becoming more widely accepted as effective for the most common food allergies (e.g., peanut), but little is known about its long-term effectiveness. If you’re not familiar, oral immunotherapy (OIT) is a method of food desensitization that involves re-introducing the immune system to the allergenic food in gradually increasing amounts over time, with the goal of eventual tolerance. Although researchers are optimistic about its potential, it is not without its drawbacks. You can learn more about OIT in Allergy Amulet’s blog post here.

The Promise and Peril of Epinephrine

Epinephrine (the hormone adrenaline) was first discovered in 1900 and marketed to treat asthma attacks and surgical shock. By 1906, with the development of a synthetic version, the drug was in common use by clinicians to treat severe asthma attacks. Immunologists and allergists experimented with dosages in the decades following, standardizing treatment protocols.

In 1975, a biomechanical engineer developed the first auto-injector syringe for the military, which was then adapted for use with epinephrine. It wasn’t until 1987, however, that the FDA approved the first epinephrine auto-injector for the general public. Epinephrine auto-injectors proved so effective—and the dosage delivered was so consistent—that it became the standard prescription for anyone suffering from a severe allergy. By the 1990s, food allergy patients were advised to carry one at all times for their safety.

In 2016, the mother of a child with a severe food allergy began a campaign against the dramatic rise in price of one of the most popular epinephrine auto-injector brands: EpiPen. The price of EpiPen surged between 2004 and 2016 – increasing from $100 to over $600. With few competitors on the market, Mylan Pharmaceuticals, the manufacturer of the EpiPen, felt no need to lower its prices. The story went viral and sparked debate about pharmaceutical industry pricing policies and access to affordable healthcare. Since the scandal broke, there has been a call to develop alternative and less expensive epinephrine auto-injectors.

The Epi-Pen story—and this post—highlight the urgent need for greater investment in allergy research and innovation. Let’s hope that with new advancements in the coming years, food allergy itself will be history. 

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Dear Mother, Dear Daughter

In the spirit of Mother’s Day, two of our food allergy mavens at Allergy Amulet wrote letters to their mom and daughter, respectively, about their food allergy journeys together. Abi Barnes, Allergy Amulet’s CEO and Co-Founder, has lived with food allergies her entire life. Meg Nohe, Allergy Amulet’s Director of Strategic Development, has a daughter with food allergies. We hope you enjoy.

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Dear Mom,

I sometimes look back at my childhood and think, This is why I have a dog. By Darwin’s logic, I should never have made it.

You raised the textbook definition of “bubble girl”: severe asthma, eczema, and the only kid I remember growing up with food allergies. And you did it all before food allergy labeling laws existed, at a time when most folks had never encountered a food-allergic child, and when food allergy organizations and advocacy groups were nonexistent. Pizza joints didn’t know what to make of a child who was allergic to tomato sauce. I like to think you’re the reason “white pizza” is now a thing. Dad and Grandma were particularly dumbfounded: How is the daughter of a long line of Mainers allergic to lobster?

I remember sitting in Nurse Losey’s office in elementary school during recess, hooked up to my nebulizer, watching classmates walk into the infirmary with bruises and scrapes on their knees seeking antiseptic and a bandage. They would glance over at me in wonder, as I breathed in clouds of white smoke from a long tube connected to a noisy white box. Nurse Losey, with her kind eyes and motherly demeanor, would smile at me and carefully close the infirmary curtains around me, shielding me from stares.

Needless to say, there were days when I felt different.

But you worked hard to create a cocoon of normalcy around me. On friends' birthdays and school events, you’d arrive with white pizza and plain vanilla cupcakes so that I didn’t feel left out. You’d adeptly deflect attention away from my special accommodations. Most kids probably didn’t even know that I was always a heartbeat away from the hospital. I also don’t remember ever being teased or taunted as a kid for my food allergies or asthma, although I’m sure it happened from time to time. You also encouraged me to talk openly about my food allergies and asthma—it was nothing to be embarrassed about, you’d say.

You were my life raft as a child. You and your fanny pack full of antihistamines, epinephrine, and inhalers. I can only imagine the stress and fear that accompanied my fragile condition. The terror that must have filled your bones when I would say those four words: “My mouth feels itchy.”

You’re a rare breed, Mom. Always have been. Anyone who knows you would say the same. You’re uncannily selfless and kind; a wellspring of creativity and optimism. And you’re fiercely genuine—a quality I constantly strive to emulate. To say that I am fortunate to have you as a mother would be an understatement. I wouldn’t have made it this far without you.   

Once a life raft, now an anchor. Thank you for first keeping me afloat, and now ever grounded. With love. Happy Mother’s Day.

Abi

P.S. Dad, I know you helped out too, but it’s not your day… ;)

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My sweet E,

I’ve often been told that a mother should always trust her instincts—that motherly intuition goes beyond scientific explanation.

A few months after you were born, I remember having this gut feeling that something was not quite right when it came to food—you had countless stomach issues, unexplained discomfort, and trouble with weight gain. We tried removing dairy and soy from your diet, administering medication for your reflux, and nothing worked. At one year old, we found out that you were allergic to peanuts and tree nuts.

And it all made sense.

I went through a flood of different emotions after your diagnosis: first fear for your safety and social adjustment as you grew older, and then anxiety over what I didn’t yet understand about managing food allergies. There was also guilt. Guilt that I spent a year not knowing about your allergies. Was it something I caused when you were in utero? Could we have prevented this? Did I fail you by not identifying the symptoms?

At the time, no one in our family had food allergies. After blaming myself for a few months, I accepted the fact that I didn’t know what I didn’t know, and decided to put my energy and efforts into ­­­­­­­­­being your advocate and cheerleader. At nights when you went to bed I researched food allergies and watched educational seminars. I trained our “tribe” to ensure you would always be safe when I wasn’t around. I quit my job in medical device branding to throw all my time and efforts into figuring out my “place” in the world of food allergy advocacy and education. Was part of this guilt-driven? A little. But mostly, I realized that there are SO MANY children like you deeply affected by food allergies, and I wanted to do anything I could to help your voices be heard.

Fast forward to 2017—we’ve been a food allergy family for a few years and you’re THRIVING! You still have nut allergies, but you’ve outgrown a couple of them, and we’ve completed oral immunotherapy for several others. You’ve learned to advocate some for yourself, and talk openly about your allergies without fear or embarrassment. And I’m SO PROUD!

I’m also thankful that we’re walking this journey together in 2017 versus decades previous. FDA food allergen labeling has come so far; and thanks to living in the digital era, we’ve been able to join a support network that we might not have had otherwise. Then there’s technology (like the Allergy Amulet), immunotherapies to help manage food allergies, and lots of food allergy innovation going on today. And I’m grateful.

Who knows, ten years from now maybe you’ll be desensitized to all of your food allergies, or maybe you’ll have outgrown them! It’s hard to even imagine that this phase of life may become a distant memory.

While this path is not one I would have chosen for you, I’m so blessed to walk it alongside you. And that’s where I’ll be. Love you always.

Mom

 

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