B.C. woman speaks out about living with rare, stigmatizing genetic condition
| Advocating for Neurofibromatosis awareness |
| A Port Moody woman is hoping to raise awareness about a rare, yet stigmatizing, genetic condition. As Kylie Stanton reports, she’s planning to put a unique talent to use, in hopes of educating both children and adults. Global BC May 20, 2026 |
By Kylie Stanton & Amy Judd, Global News May 20, 2026
A Port Moody, B.C., woman is speaking out about a rare and stigmatizing genetic condition in the hopes of raising awareness.
Kirsten Anne was diagnosed with neurofibromatosis when she was only two years old.
“So, I don’t really know what it is like to not have this,” she told Global News.
Neurofibromatosis, or NF, Type One, affects one in every 2,500 Canadians. It is a rare genetic disorder that causes the uncontrollable growth of non-cancerous tumours on the nerves.
“It can also impact your hearing and vision, you can have scoliosis, bone deformities, airway blockages, you are at higher risk for certain cancers like breast cancer,” Anne explained to Global News. “And because it is so individualized, it does impact everybody differently.”
In her case, her tumours are concentrated on her back and torso.
Growing up, Anne said the physical differences were hard to explain and hard to hide.
“As a child going through that and being called names and other awful things, that does also stick with you,” she said.
| BC denies funding for drug to help treat rare blood disorder. Global News at 6 BC |
However, Anne is now taking those experiences and channelling them into her art, while advocating for others navigating the disorder.
She has toured elementary schools, teaching children about acceptance and empathy, as part of an educational puppet troup.
“My ultimate goal one day is to have an NF puppet show, so I can educate people,” she said.
“As a puppeteer, I find that even adults — it’s just easier to reach them with any sort of message with a puppet. It’s non-threatening, it’s just a little bit easier to digest.”
May is also Neurofibromatosis Awareness Month, which helps start the conversation about improving care and quality of life for those navigating a diagnosis.
“It does require a multi-disciplinary clinic,” Dr. Sarah Lapointe said.
“And there are a lot of trials out there in the pipeline to, you know, have hope that we can manage this syndrome and this condition, every day. So, yes, I think the future is bright.”
Anne said she hopes her message allows her to take centre stage.
“I want to be a voice for them and to uplift them, so they know that they aren’t going through this alone,” she said.
Source Global News
