Port Moody puppeteer with genetic disorder advocates for greater care and understanding

It was a chance to be herself and to be more than herself. To disappear while commanding the spotlight.

It was a chance to be Sally and a way to move forward.

Growing up with tumours caused by a rare genetic disorder, Port Moody resident Kirsten Anne has faced plenty of scrutiny.

“Changerooms in school were kind of a nightmare,” she says, recalling a terrifying encounter with an adult who demanded to know what was wrong with her.

Sitting at a Rocky Point Park picnic table, Anne speaks at length about living with neurofibromatosis 1, chronic pain, and the challenges so many face in seeking treatment.

“This is something that I am going to have forever,” she acknowledges.

Besides tumours, neurofibromatosis can result in a curvature of the spine and increased risk of cancer.

Diagnosed at two years old, Anne says she didn’t realize the extent of the condition until she was a teen making frequent trips to the hospital.

“I realized, ‘Hey, none of my friends have to do this,’” she says.

She says the experience made her more empathetic to other people living with neurofibromatosis.

While Anne praised her doctor for learning about neurofibromatosis, she’s heard from other people who don’t have access to good care.

“In all of Canada, there’s only one doctor who specializes just in NF,” she said, adding that he’s based in Toronto, Ont. leaving B.C. patients facing a long waitlist and a long trip.

While there’s good pediatric care through Vancouver Children’s Hospital, being an adult with neurofibromatosis requires a lot of time and energy, she says.

“Once you leave pediatric care it’s like you’re being thrown into the wilderness.”

Anne says she’s heard stories about patients with neurofibromatosis being turned away by doctors who didn’t seem to understand the gravity of the condition.

“Having all these experiences makes me want to advocate for them as well as myself,” she says.

That advocacy has taken many forms, from telling her story to emphasizing the need for mammograms and other cancer screening procedures to calling for a West Coast clinic and serving as vice-president of the Tumour Foundation of B.C.

Part of her mission is to let other people with neurofibromatosis know they’re part of community.

“I do hope that if other people with NF see me sharing my story, they might be more comfortable to share theirs as well so they know that they’re not alone in their journey.”

To accomplish that aim, Anne is pursuing her passion for puppets.

While her educational background was devoted to Shakespeare, she’d been working for a theatre company when, during a production of Avenue Q, she found herself riveted by the puppets.

“The second I got an actual puppet on my hand I was like, ‘This is what I want to do.’”

The puppet “felt like an extension of myself,” she says.

Her main puppet, Sally, is on the goofy side. “I use her to get that out because I don’t really think I’m a goofy person.”

She learned how to use her voice, the subtleties of using her hand to make her puppet lifelike, and how to rig an at-home camera setup.

“I find people connect with a puppet easier sometimes than a person.”

She says her ultimate goal is to educate people about neurofibromatosis through a puppet-based web series

In the meantime, she’s trying to do her part to raise money and knowledge about the condition.

On June 28, Anne plans to do the five-kilometre Vancouver Charity Challenge run.

“I will probably mostly be walking,” she says with a laugh.

Fast or slow, she’s finding a way to move forward.