A lifelong journey
Living with a rare disease can be hard. Many struggle to find the right diagnosis, get access to the right treatments, or any treatments at all. Sometimes, they face discrimination, stigma or even exclusion. Those living with the condition notice every small change about themselves and wonder what it could mean.
Neurofibromatosis can cause tumours to grow on any nerve ending in a person’s body and therefore each person will face different challenges and potential complications depending on the size and location of the tumours and their rate of growth.
Fortunately, some people will only ever develop mild symptoms, but others will have ongoing, complex health issues that may eventually become life-threatening. Each person has a unique journey and their needs change as they move from childhood, through adolescence and into adulthood.