September 17, 2016 - 11:30 AM
"THERE WASN'T MUCH ELSE I COULD DO."
KAMLOOPS - Maura Weston-Lee is in her final year of high school in Kamloops, but while her classmates attend grad parties, she attends doctors appointments.
The 17-year-old is one of five people in Canada who are battling an autoimmune disorder called Polyendocrinopathy, a condition which affects the body’s cortisone production.
Maura says her pituitary gland doesn’t send signals to her adrenal glands to produce cortisone.
“It makes me tired, and if I have major trauma like a broken bone, a severe injury, or I pass out then I have to have a (cortisone) injection,” Maura says. “Your body creates cortisone when it’s under stress. Mine doesn’t do that, so it can mean that my heart can stop.”
Maura was diagnosed with the disorder in 2014, but the problems started long before that.
“I don’t think it really sunk in that they were diagnosing me. At that point I’d been sick for a really long time so it was just another thing to handle, and kind of an answer which was nice, too,” Maura says. “It was just another thing to start dealing with. There wasn’t much else I could do.”
Everyone in Maura’s life who spends significant amounts of time with her has to know how to administer a cortisone shot in case Maura passes out or goes into shock.
Her mother, Michelle Weston-Lee, says she knew something was wrong with her daughter when Maura was a toddler.
“She broke her thigh when she was four which was really unusual,” Michelle says. “She had lots of broken bones.”
Maura says the symptoms of her disorder include weak bones, passing out, fatigue and dizziness.
“The problem with it too, is it’s invisible. If you were just looking at me you wouldn’t be able to tell,” Maura says. “People just have to take my word that I have it.”
Throughout her life, not everyone has believed Maura. Many of her former friends thought she looked perfectly fine and healthy and she was making it up for attention.
“Maura’s health can change from hour to hour, so she can make plans and not be able to follow through, or just not be able to be included because it’s an activity she can’t do. They think ‘Oh she’s just making it up for attention’ or ‘Aren’t you lucky you don’t have to go to school very much?’ when Maura wishes she could go more,” Michelle says.
“There are lots of parties and stuff that go on all through the summer and all through the school year. I don’t go to those because that’s just dangerous,” Maura says.
Maura’s weak bones mean they can break very easily. She’s broken both of her ankles, both of her arms, parts of her leg and has even had fractures in the back of her neck.
“There are things other kids can do that I can’t. It’s not a choice that I make it’s what I have to do for my health,” Maura says.
Maura has to use several different pieces of equipment to make her life easier and make her more comfortable. She has an electric bed, a machine for her headaches, a blood pressure machine and a machine to help relax her muscles.
Michelle says crutches, air boots and tensor bandages are always on hand.
Maura's condition has put a financial burden on her family and since she can't be alone her mother had to stop working.
“I had to stop working. I lost three jobs … from too much time off," Michelle says. "It was always a stress, if Maura was at school that she might suddenly have to come home.”
Maura has learned to do different things with her time instead of parties or sports.
“I do ballet, that’s something that I really love doing. It’s low impact and it’s really good for my bones to have that movement,” Maura says. “Everyone at the studio knows (how to give the injection) and they’re all really good. If I have to miss a class, they catch me up.”
Maura also stays caught up with school, although she can’t attend full days. She usually goes to school in the morning, but leaves after lunch so her body can rest.
“I only take two courses and I have a tutor, so I have a lot of support outside the classroom. If I do miss a day then it’s not a big deal I can catch up with the work.”
One thing Maura wants her peers to know, is she doesn’t want to miss out on school or activities, it’s just what’s best for her.
“There are things other kids can do that I can’t. It’s not a choice that I make it’s what I have to do for my health.”
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