When Tayla* was born, even the most experienced doctors and specialists couldn’t figure out what was causing her to fall sick with severe rashes across her body.
“Pretty much since she was out of the womb, we knew she had some issues,” Tayla’s mother Leisa told 7NEWS.com.au.
The newborn spent nine months in a Queensland hospital, where she was poked and prodded before finally being diagnosed with an extremely rare mast cell disorder known as systemic mastocytosis.
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Systemic mastocytosis is a disorder in which white blood cells attack the body.
Triggers — such as a change in weather, different foods, and even exercise — can cause mast cells to release excessive amounts of histamines, causing pain, fatigue, nausea, vomiting and many other painful symptoms.
Now a teenager, Tayla says it has been a long battle for both answers and treatments that will help her manage the terrifying condition.
Anything from the sun, to a storm, or a long list of foods can cause a flare-up for Tayla, who also has a blood circulation disorder known as postural orthostatic tachycardia syndrome (POTS) — adding further complications.
“One day I could have a whole handful of strawberries and be completely fine and the next I have an allergic reaction to them,” she told 7NEWS.com.au.
Equally, for Tayla’s family, it has been a difficult road to navigate her varying flare-ups.
“It’s been really scary and incredibly frustrating,” Leisa said.
Because of Tayla’s constant reactions during periods of warm weather, the family decided to move from Queensland to Victoria.
“Tay was so reactive to the heat that we made the decision to move to a colder climate,” Leisa said.
“Queensland’s just not a great environment for Tayla so we made that decision as a family.
“We miss our family up there and visit as often as we can but it is hard.”
A beach scare
Tayla’s condition caused a number of extremely stressful days as the family tried to get a handle on her symptoms — particularly during times of extreme weather.
“We have to worry about the heat, the sun and the rain because storms can be big triggers for her,” Leisa said.
“We can’t go out in a bad storm because she gets heart palpitations, adrenaline surges and the mast cells just don’t regulate.”
Leisa said she remembers one day at the beach where Tayla had an extreme reaction.
“I think it was Black Friday when the fires were happening,” Leisa said.
“I took the kids to the beach and Tayla doesn’t really remember much of it but the water was so cold, but it was a 42C day, and Tayla stood in the water and she just went pale and her lips turned blue.”
Tayla’s body had entered a shock state due to the dramatic changes in climate and environment to which her body was exposed.
“The reaction was triggered so quickly with the hot and the cold, her body just couldn’t regulate,” Leisa said.
‘All she wants to do is sing and dance’
Tayla, who has a passion for dancing, was bedridden last year from April through to September and has “missed out on so much”, Leisa says.
During that time, she spent two weeks in hospital in July with chronic fatigue, chronic pain, and lack of mobility from POTS.
“She couldn’t attend school as her meds weren’t right,” Lasaid.
“All of these things stemmed from the mast cells not being stabilised properly …
“But, when you see a child in bed for five to six months … it’s incredibly hard, and it’s really hard seeing your child miss out on everything a normal teenager should do.
“It was all really hard for her because all she wants to do is sing and dance.”
Tayla says she has had to make decisions to miss out on certain activities due to her mastocytosis.
“Our school went on this big trip to Malaysia and all my friends got to go but I had to make the decision not to go,” she said.
Extremely rare case
For people without mastocytosis, mast cells help a body’s immune system function properly to protect a person from disease, the Australasian Mastocytosis Society explains.
However, for people such as Tayla, a build-up of mast cells in the skin, bone marrow, digestive tract and other organs can trigger complications.
These mast cells then release substances that can cause signs and symptoms similar to those of an allergic reaction.
In severe cases, it can cause severe inflammation leading to organ damage.
In a large majority — 67 per cent to 80 per cent — of paediatric cases, the mastocytosis will resolve before or during early adulthood, according to a National Library of Medicine study on childhood mastocytosis.
Unfortunately, this hasn’t been the case for Tayla.
“Teenagers having systemic mastocytosis is almost unheard of … so, even when we speak to doctors, they don’t know what’s going to happen … we don’t know the progression,” Leisa said.
“We kept being told every year she was going to grow out of it, but when she hit puberty the mast cells just got worse.
“So, we just go with the flow and treat our symptoms as they come.”
Because her case is so rare, Tayla says communicating with medical staff has been frustrating.
“Sometimes I get really frustrated with doctors because they don’t understand what I’m telling them,” she said.
Tayla says it’s really important to her to raise awareness and a better understanding of her condition.
“People confuse mast cells with food allergies and assume I will grow out of this or get better with time,” she shared with the Royal Children’s Hospital in Melbourne.
“This isn’t the case and I can’t help how my body reacts.”
Fresh hope
After being bedridden last year, Tayla teamed up with a new exercise physiologist who has placed her on a rehabilitation program to get her body moving again.
“So, it’s about being a little bit more practical with her being a teenager — instead of going gung-ho, and just steadying her,” Leisa said.
Some new mast cell medications and a change in dosage have also proved helpful in managing Tayla’s flare-ups.
Tayla and Leisa said the new treatment plans have been more “open-minded” and the medications appear to be helping so far.
“The meds really have been life-changing… so, we are hoping this year is going to be very different to last year,” Leisa said.
* Last name withheld for privacy
