Neurofibromatosis Awareness Month

Neurofibromatosis (NF) Awareness Month is held each year in May to improve understanding of the signs and symptoms of NF, to share the stories of real people affected by the condition and to educate Australians on the diagnosis and treatment.

NF occurs in 1 of every 2,500 people, affecting more than 2.5 million people around the world. So why don’t more people know about it? Because there is no simple way to define NF. It’s impact can be both visible and invisible. You may barely notice you have it or it could be life-threatening.

You could lose your sight or hearing. You could have bone abnormalities and learning difficulties. You could live in chronic pain or develop cancer. Social isolation, anxiety and depression are not uncommon. There is no way to know your fate. You watch and you wait. You grieve for what you lost.