LOVING LIFE- Courtney Willoughby continues to bring awareness to neurofibromatosis

Fighting to raise awareness of a little known condition

City girl planning fundraiser for research into neurofibromatosis

A local young woman is counting on the support of the community to help raise much-needed funds for neurofibromatosis (NF) research.

Courtney Willoughby, 17, was diagnosed when she was three, and has chosen to step up and help raise both awareness about NF and funding for research.

There is no cure for NF and although it is one of the most common genetic disorders in the world, not many have heard of it. Unfortunately, little money is provided for research into finding a cure.

“We call it the forgotten disease – that’s what I like to refer to it as,” explains Willoughby. She is thrilled that The Keg has offered to host a fundraising event/silent auction for research funding. The fundraiser is set for March 18th from noon to 3 p.m.

Folks are invited to drop in for beverages and appetizers as well as to meet Willoughby and learn about her work in regards to raising awareness about NF. All funds raised will go to the Friedman Lab at University of B.C. for research into NF. ‘I’ve wanted to do something like this for a very long time,” she said.

Donations to the silent auction are welcome, and Willoughby will be selling special bracelets she has made as well.

For Willoughby, who is in Grade 12 at Hunting Hills High School, NF brings constant health challenges. When she was 13, she had a large growth removed off of her back which consisted of little tumors that had grown on her skin.

She then had a baseline MRI and doctors found a growth in her brain as well.

Thankfully, it hasn’t grown so it doesn’t present any problems. If it was growing, she would likely undergo chemotherapy and radiation but surgery would be an impossibility because of its location. It does, however, mean that Willoughby has to deal with hormone imbalances. She also has scoliosis (curvature of the spine). She also suffers from a headache that never lets up. “I’ve had a headache everyday for the past four years.” Doctors have no idea why this is happening, and simply have to chalk it up to NF.

“There’s also been a few new tumors that have been found, but that’s very common in people with NF,” she explained. “We’re not too worried about them right now, although they do cause pain.”

This past summer, she visited the Mayo Clinic in Rochester, Minnesota for consultations with seven specialists.

Neurofibromatosis (NF) encompasses a set of genetic disorders that cause tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. There are three types — NF1, NF2 and Schwannomatosis. 

Neurofibromatosis 1 occurs in one in every 3,000 births.

It’s characterized by multiple spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine may also occur. Occasionally, tumors may develop in the brain, on cranial nerves or on the spinal cord. NF 2 is much rarer occurring in one in every 25,000 births.

Schwannomatosis is a rare form of NF that has only recently been recognized and appears to affect around one in every 40,000.

More than two million people worldwide are affected, and that makes NF more prevalent than cystic fibrosis, Tay Sachs disease, muscular dystrophy and Huntington’s disease combined.

As Willoughby points out, NF can present a range of problems from skin discolouration to large tumors. And although it is a genetic disorder, there is no history of it in her family. Her case has been caused by what is called a ‘spontaneous mutation’.

Incredibly, Willoughby presses forward with a solid determination. She’s bright, positive and absolutely engaging. And she’s got a long-term vision in mind — she wants to study medicine and work as a nurse practitioner one day.

“Some days it’s really hard to try and keep up the positive attitude. But I know it could be so much worse. I’m thankful, because I can still thrive in my day-to-day life. I just want to help others. I can’t control having NF, I just have to accept that and carry on.

“For a long time, it was hard for me – I thought why me, why this? I felt so alone – like not one else had this. So if I could save one person from having those feelings, then everything is worth it.”

For more information, visit www.albertanf.org. For more about the fundraiser or how to help out, email nfsolvethepuzzle@gmail.com, call 403-346-6360 or check out the facebook page called ‘Neurofibromatosis Fundraiser.’

Readers may also want to check out http://www.youtube.com/watch?v=UKU4WAjg_BE — a powerful short video that Willoughby and her cousin Kevin McGrath put together.


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