You’ve heard of Cystic Fibrosis? Muscular Dystrophy?
NF Is More Common.
Yes, really. Neurofibromatosis – or NF as it is commonly known – is an umbrella term for three genetic disorders that share the hallmark of uncontrollable tumour growth on nerves throughout the body, brain and skin.
- NF affects 1 in 3,000 people.
- That’s more than 2 million people worldwide, making it more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.
- It can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer.
- More than half the people affected with NF will develop significant disfiguring tumours on their skin resulting in bullying and victimization experiences.
- NF doesn’t care about ethnicity or gender.
- Half of the people who develop NF inherit it from a parent – the other half develop it as a spontaneous mutation.
- Sounds bad, but we know how to fix it, right? Nope. There is no cure.
- A big part of the problem is that it’s poorly understood and not often recognized by the medical community – and no one who has it wants to talk about it… So it’s sort of a ‘secret’. Well, not anymore because now you know about it – that’s how we start.