A 9-year-old has been forced to wear a onesie to school after becoming allergic to her uniform. Lily Mason, from Nottingham, England, suffers from MCAS — mast cell activation syndrome — a rare immunological disease that causes her immune system to be hypersensitive.
Last October, the schoolgirl had a reaction to her uniform which left her with a burning rash over her body. Her mom, Joy Mason, 33, now has no option but to send her daughter to school wearing a furry panda onesie because this is the only garment that doesn’t irritate her skin when it flares up.
Lily’s allergies can be triggered by anything. According to the National Institute of Health, MCAS happens when “cells mistakenly release too many chemical mediators, resulting in several chronic symptoms involving the skin, gastrointestinal tract, heart, respiratory and neurologic systems.” Irritants can cause symptoms as benign as itching and fatigue or as severe as anaphylaxis, a life-threatening reaction that causes a person to have difficulty breathing.
“Certain fabrics can affect her skin, but because her condition changes so often, it’s impossible to keep track,” her mom Mason tells the Mirror UK. “One day it’ll be fine, but another it won’t. Her skin was beyond sore — causing her immeasurable pain. We have special cushions so she can sit down, and the medication can reduce the reaction.
“She didn’t have to wear it long, but that was because her symptoms had changed. One day she can be allergic, and the next she’ll be allergic to something else.”
Lily was diagnosed with MCAS last year after years of fluctuating symptoms and misdiagnoses. “Her immune system is in overdrive. It was only recognized as an illness since last year, but it seems everything acts as a trigger,” says her mom. “From food to smells, Lily lives almost in a bubble.”
“When she was diagnosed, the [doctor] didn’t even know what the condition was. It’s a total change from how I thought a family would be,” her mom added. “Our life is making sure Lily is as well as possible. … Yet there’s so many different ways that she is unwell, it’s hard to say what’s worse. Sometimes she’ll beg me to make the reactions stop. You just can’t see how it’s ever going to be normal.”
The illness is genetic, and although her younger brother, Harry, 7, hasn’t yet displayed any symptoms, there’s a 76 percent chance he could be diagnosed with MAST too because he is a first-degree relative. “It’s a condition that can appear at any point in a person’s lifetime,” says her mom. “We are still discovering what Lily’s triggers are and we’ve learnt she’s had the potential to be allergic to anything.”
Lily is able to eat only nine foods, and with medication that only works partially, often can be isolated from the outside world. She’s a tough cookie though. “Because it’s so hard to diagnose, it’s impossible to know how many people have it,” says Mason. “It’ll never be completely manageable, but she avoids triggers when she can. And if that means she has to attend school wearing a onesie, so be it.”
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