World Neurofibromatosis Awareness Day is coming! Help us raise awareness of Neurofibromatosis more and more!
What is World Neurofibromatosis Awareness Day?
On 17th May 2018, we celebrate World Neurofibromatosis Awareness Day, the main aim of which is to raise the profile of the neuro-genetic condition Neurofibromatosis. Sadly, many people are unaware that the condition even exists, let alone the impact it has on those living with it. Despite it being more common than Huntington’s Disease, Cystic Fibrosis and Muscular Dystrophy combined, many medics, politicians, and other healthcare professionals have never heard of the condition. This can be seen as a contributing factor to low funding, and in turn a shortfall in service and support.
What is Neurofibromatosis?
Neurofibromatosis might seem like a long word, but it makes sense. If we break the word down, it means: "Nerve" (Neuro) "Tumour" (Fibroma) "Increase" (tosis).
The term is actually an umbrella-phrase for a collection of sub-variant conditions - Neurofibromatosis Type 1, Type 2, Schwannomatosis and Legius Syndrome. Together these conditions affect over 26,000 people in the UK. People living with Neurofibromatosis develop tumours along their nervous system which can be itchy, painful, and can cause medical complications. Not all tumours are visible, but some can be disfiguring. Neurofibromatosis, often comes with what we call "associated conditions" such as scoliosis, autism, visual impairments or audio impairments. Neurofibromatosis is genetically dominant, which means it can be passed on to your children. In fact, with Neurofibromatosis there is a 50% chance that your child might be born with it.
How can I help?
There are many ways to get involved with World Neurofibromatosis Awareness Day 2018! This year, the best and easiest way, is by clicking one of the buttons below, and helping us spread the word: people with Neurofibromatosis need more support, and we want to continue increasing that support!