SPEAKING OUT- Courtney Willoughby

Living with neurofibromatosis; the ‘unknown disease’

Local girl wants to raise awareness about common genetic disorder

Courtney Willoughby, an amazingly well-spoken, determined and passionate 17-year-old Grade 11 student at Hunting Hills, lives with challenges of neurofibromatosis (NF) every day.

There is no cure for NF and although it is one of the most common genetic disorders in the world, hardly anyone knows anything about it, unless you know someone with it.

“Neurofibromatosis affects about one in 3,000 people, making it more common than cystic fibrosis, muscular dystrophy, Huntington disease and Tay Sachs disease combined, but basically there is no awareness of it whatsoever,” says Willoughby.

May is Neurofibromatosis Awareness Month. Willoughby decided she might as well be the one to make people more aware of it.

“I was diagnosed with it when I was three and I’ve basically hidden it from friends because it didn’t really affect me until I turned 13. I was afraid of how people would react to me,” she says.

“I didn’t want to be treated any differently. I just wanted my friends to think I was a normal kid. I finally said, ‘You know what? If they don’t want to be my friend any more because I have this disorder, then it’s not worth it, they’re not a true friend.’ They have to like me for who I am. It’s part of who I am.

“For me NF is a disorder where tumours grow in your body, and outside your body, uncontrollably. When I was 13 I had a large birthmark removed off my back — just basically little tumours that have grown on my skin. Then I had a baseline MRI done and they found a growth in my brain, very common with people with NF. Lucky for me it basically has no effect on me. It hasn’t grown in three or four years so surgery is not needed.”

Willoughby also has scoliosis, curvature of the spine.

“And lucky again for me, my curve isn’t that bad and it doesn’t require any surgery. I have two growths in my pelvis, and those have grown slightly and as long as they don’t cause any problems I won’t need surgery anytime soon. I have growth hormone deficiency, which basically is why I’m so small for my age. I also have chronic daily headaches. It’s always there. They don’t know why. However, I know it could be much worse.”

Other symptoms of NF include optic glioma (tumours on the optic nerve), tibial dysplasia (bowing of the legs), learning disabilities, early and late onset puberty, epilepsy, strokes and hormonal disorders.

In April Willoughby attended an NF conference in Calgary, where she met Reggie Bibbs, a spokesperson for NF from Texas with large tumourous growths on his face.

“He was the one who inspired me to share my story with people. I’m very thankful I do not have it to that extent. I’m actually hoping to go into medicine and treat people with this disorder, just to try to bring more awareness to it and help kids. The point of this is not to get sympathy but to educate people. This is shaping who I am and will shape me in the future and I could have much worse things. I’m thankful for it (NF) in a way.

“Lots of people refer to it as ‘Elephant Man’s disease’ and it’s not. That’s very offensive to people with NF (the character in the book and movie of that name had another disorder). There’s no cure for NF. The only (temporary) cures are surgery and that’s not very pleasant. These tumours come from your nerves and if they don’t remove the entire nerve the tumours can grow back.

“Then, obviously, you have no feeling under your skin. I have friends who’ve gone through 17 surgeries and have five more lined up. Most of my NF friends are on facebook and I’ve joined a couple of support groups. I only know three people in Red Deer with it.”

Some people never require treatment for tumours while others have hundreds of surgeries. Willoughby urges people to learn more about NF or make a donation to support research at www.albertanf.org or www.ctf.org.

“Anyone’s dollar could be the one to find a cure.”


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