Tayla shares what it’s like to be a teen with systemic mastocytosis

Sixteen-year-old Tayla was diagnosed with systemic mastocytosis as a baby, however it took a further four years of specialist appointments, testing and emergency department visits for treatment to begin.

Mastocytosis is a mostly harmless condition where a greater number of mast cells than normal build up in parts of the body.

In children, mastocytosis most commonly affects the skin however for young people like Tayla with the much rarer systemic mastocytosis, mast cells gather in different parts of the body, affecting internal organs, bone marrow and digestive tract.

For people with systemic mastocytosis, certain 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.

As a baby, Tayla and her family moved from Queensland to Melbourne, as the cooler climate was better suited to her condition.

“It was so rare to see a child so young present with symptoms like mine and they had to be sure we were on the right path for treatment,” Tayla said.

To help others understand her condition, Tayla describes it as being as though she is allergic to things others take for granted.

“I tell people my body likes to overreact to everyday things. I react to the sun, the cold, weather changes and now certain storm activity.

“It’s hard to explain to people that I react to food that I am not even allergic to. One day I can eat it but another day it might make me go into an anaphylactic reaction and trigger my mast cells to misbehave.

“I can pass out from exercise or physical activity simply because my mast cells have triggered a dysautonomia response – causing adrenaline dumping episodes where I can’t stop vomiting.

“The sun and the weather are still two of my worse triggers as well as random foods and exercise. I give up a lot of teenage stuff just to be able to function on a basic level which most take for granted.

“Sleeping helps to reset my body – I sleep for days, but more recently this has been weeks at a time to reset and function.”

When she is well enough, Tayla attends a performing arts college, which she says gets her out of bed on her good days and helps her push through.

“I do love to perform though – it is my life. Performing is difficult to maintain though as I constantly must watch what I eat, watch my sleep and exhaustion levels.

“My ultimate dream is to be Glinda in a professional Wicked production. I love to dance, sing and act.”

Tayla is extremely grateful to her doctor, Tom Connell, who has been overseeing her care for more than 12 years.

“I know I have been confusing over the years, but he always takes such good care of me,” Tayla said.

“I have a great team of other specialists that I check in with several times each year and the cardiology and chronic pain management teams are always helping me with medications to help maintain some kind of normality in my life.

“Dr Tom helps get me my medications from other countries as they are not available in Australia, he organises test and scans to make sure my body is adapting to the medications and coordinates all my other doctors.

“I can’t thank him enough for listening to me.”

It is very important to Tayla that people understand her condition.

“People confuse mast cells with food allergies and assume I will grow out of this or get better with time,” she said.

“This isn’t the case, and I can’t help how my body reacts.

“It’s important for me that people understand I am trying hard though. Trying hard to manage everyday life. I want to be just as active as the next teenager and just as good as the next performer.”

Tayla’s mum Leisa says she is incredibly proud to watch Tayla navigate living with systemic mastocytosis.

“It’s been difficult at times to watch your child missing out on normal, everyday things. She has been through a lot and missed out on so much in fear of having reactions and being sick.

“But from a young age she has learnt that life was always going to be a challenge and more difficult for her than most.

“Knowing how much she has sacrificed over the years, and to watch her sit back from the sidelines, it’s hard as a parent to see your child want for something but not being able to have it themselves.

“Tayla is that child that is always barracking for her friends, her family in everything they do, and she inspires me to become a better person.

“Even on her sickest days, she will have a smile and still ask how my day was. I am the luckiest parent in the world to have her call me ‘mum’ and I am so proud of the young woman she has become.”

Thank you to Tayla and Leisa for sharing their experience with us on International Mastocytosis and Mast Cell Disease Awareness Day.

One comment for “Tayla shares what it’s like to be a teen with systemic mastocytosis”

  1. maria fichera-nesci

    My 15 year old daughter was diagnosed with Mastocytosis – but many doctors are not aware of this condition and don’t know how to manage it – I would love to get in touch with Dr Tom Connell and see if he can help her with the symptoms.

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