I am participating in Mega Hero March to raise $$$ to continue to research 'cures' and support those afflicted by NF. Especially for our son Sam.
NO really it's all about the CAPE !
Neurofibromatosis can be a devastating condition. It has no cure. I have NF, as does my son. We are not the only ones in our extended family with this condition.
NF is a genetic condition which causes tumours to form on the nerves anywhere in the body at anytime.
Living with a very visible difference can be challenge. You can’t always hide it. Among other things learning issues, disfiguring tumours and extreme nerve pain can also be problematic for those with the condition.
Because NF causes benign tumours to grow anywhere in the body -sometimes they turn malignant and I had a rare malignant (cancer) sarcoma in 2014 and a few benign tumours removed.
On the whole my NF is quite mild in comparison (others in my family have been much more affected) except for the very rare malignant tumour.The Children's Tumour Foundation helps all of us lead better lives.