Receiving a life-changing diagnosis is hard enough. When you’re living in a remote community, it can seem even harder. Elly Ward, of Southampton Ontario, remembers the feeling all too well.
An allergist had just confirmed what her family strongly suspected: their son Hunter was allergic to peanuts. At just 8 months old, he’d been rushed to the ER with hives around his mouth and on his hands just seconds after consuming a tiny amount of peanut butter, his symptoms quickly worsened. Having an official diagnosis eased their minds a bit, Elly recalls, but the quest for answers was just beginning. “We were new to the allergy community and we had no idea what to do and who to turn to.”
The family combed through the kitchen, throwing out all the foods that might cause a reaction. When they went to replace them, they were faced with a greater challenge. Where to buy something safe? Toronto was a 3-hour drive and even a decent grocery selection was half an hour away. Elly found herself going from store to store for products she felt comfortable giving her son.
Desperate for answers, she continued researching her son’s condition online and what treatments or therapies may be available. Hunter was deemed too high risk for oral immunotherapy (OIT) due to his history of allergic reactions. OIT refers to a medical protocol where a patient consumes small amounts of a food they are allergic to, such as peanut, in a controlled environment (allergy clinic/hospital). Over a prolonged period of time the dose (amount of the allergen) is gradually increased. The goal of OIT is to induce “desensitization”, where the person can eat more of the food without having an allergic reaction than they were able to prior to OIT.
Since OIT was not an option, she read up on the peanut patch, an experimental allergy therapy which aims to desensitize the skin’s immune cells and make them accept peanut more readily. Elly started calling the nearest clinic offering peanut patch trials on a weekly basis to ask about enrollment. It was after these calls that she got the good news: the Wards would be the first family enrolled in the phase 3 trial.
Since Hunter went on the peanut patch, there have been a lot of ups and downs — especially after finding out he had been on a placebo and not actual peanut protein the first year.
“That was a really huge downfall for us,” Elly remembers. “We thought, should we continue for another three years when we were thinking we were a third of the way through?”
Then came the turning point.
At the same time Hunter was in the clinic, there were families in phase 2 present. As Elly watched these children do their food challenges, something struck her: they were eventually able to eat significantly more peanut than before. “These moms were in tears because they were so happy that they were going to be able to reduce the risk of reactions due to accidental cross-contamination and have some peace of mind.”
Increasing quality of life is the goal for the Wards, they know a peanut patch won’t cure Hunter’s allergy, but they’d like to increase his tolerance, so they don’t have to worry about anaphylaxis during accidental exposure.
Hunter, now 7 years old, recently started year 3 on the real patch in the clinical trial. He’s itchy all the time and some days he doesn’t want to wear the patch at all. But he’s old enough to understand the long-term benefits and he wants to stick it out.
No Nuts About Us online store
Elly had such a hard time finding safe food that she ultimately created No Nuts About Us, an online store offering a large selection of peanut- and nut-free food and personal care products. She stocks everything from dairy-free chocolate (her biggest seller) to lip balms, and she’s thrilled to be able to provide options for other allergy families.
The idea came after her regular shopping routine involved visiting multiple stores, both in person and online, to find products that the whole family could enjoy. “It was just frustrating to think, ‘Why can’t these all be available in one spot?’” says Elly.
With this online store, “I hope that I can help alleviate some anxiety and stress for other families like mine who deal with food allergies and need to keep their children and loved ones safe.”
Living more confidently with food allergy
Although her food-allergy anxiety hasn’t really decreased much, she admits, Elly is learning to manage it better. She knows which foods are safest for Hunter, which restaurants best accommodate his needs, and which situations are least risky.
Asked what advice she’d give to the newly diagnosed, Elly doesn’t hesitate. “There’s so many of us out there and we all felt the same way when we first diagnosed. It’s hard and it’s scary and you’re going to be anxious, but there are people and organizations out there to help.” Even if the closest city is hundreds of kilometres away, she says, you’ll never be alone.
Thank you, Elly for sharing your journey!