“People have no idea what NF is,” says Christine Maunu.
She is a 33-year-old market researcher in Toronto who suffers from neurofibromatosis (NF). People who have NF develop benign tumours, which can grow along the nerves anywhere in the body or on the skin. It is often inherited, but in Maunu’s case, it came out of the blue.
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She first noticed bumps on her torso when she was about 14 years old. This is typical of NF; the diagnosis is often made in young people.
Maunu is one of about 11,000 Canadians who are living with NF. It is one of the most common genetic disorders, far more common than cystic fibrosis or Huntington’s.
As she got older, she noticed more and more bumps. When Maunu was in her 20s, she started doing online research about NF and became scared. Some of the possible results of the disease are a shorter lifespan, blindness, deafness, learning disabilities, curvature of the spine, and painful tumours. Many with the disease decide not to have children because each child has a 50/50 chance of acquiring the disorder.
“This was one of the most upsetting moments of my life,” says Maunu, choking back tears as she remembers the research. “I was crying. I thought I was going to die.”
Ten years later, Maunu is much healthier than she thought she’d be when she was in her darkest hours. She works full time at Metro Toronto, and has no problem being active. She’s brave enough to tell her story, hoping to raise awareness about the disorder and thereby help others with NF who feel isolated and misunderstood.
Shunned on public transit
Christine Maunu has small bumps from NF on her arms. She often wears long sleeves, but this summer has been hot, so she’s been wearing short-sleeved shirts.
Recently, she was sitting on a bus and someone was about to sit beside her. The other person noticed the bumps on her arms, looked disgusted and went to sit somewhere else. Maunu decided to share her story with readers of Metro. She also volunteers for NF Canada, an organization dedicated to improving the lives of Canadians living with NF. It relies on donations to help ease the emotional and physical suffering of those with NF.