Dialog Box

Children's Tumour Foundation of Australia

South Coast Register

Nikkita and her daughters live with Neurofibromatosis, here's what she wishes people knew

Title: South Coast Register

Date: Monday 3 May 2021


May is NF Awareness Month and one thing Nikkita wants more people to know is that it [NF] is a common condition, affecting around 10,000 Australians, but it often goes undiagnosed. 

"If more people are diagnosed, then more people can be treated properly, and more of us can be understood," she said.

Diagnosed at age six herself, Nikkita also wants to raise community awareness of the complexities and anxiety associated with living with NF.

"This is a condition that does not have a pause button, an off switch or reset," she said.

A paediatrician diagnosed her based upon six café-au-lait birthmarks and freckling. The flat, coffee-coloured birth marks are seen in just about everyone with NF1. Her learning difficulties were a secondary indicator to confirm the diagnosis.


03 May 2021
Category: Media