It affects one in 2000 Australians and a baby is born with it every three days but the genetic condition neurofibromatosis is remarkably little known by the public.
It's a lack of awareness the Children's Tumour Foundation and people like retired ACT teacher Brian Shaw are keen to redress, most recently through its Shine a Light campaign.
Neurofibromatosis (NF) is a set of three complex lifelong genetic conditions that cause tumours to form on nerves in the body, including the skin, brain and spine.
About half of those affected will have inherited it from one of their parents.
It is most often diagnosed in childhood and characterised by brown skin spots called cafe-au-lait marks, freckling in the groin and armpits, and benign tumours known as neurofibromas.
These tumours can lead to physical differences, blindness, deafness, learning difficulties, chronic pain and scoliosis. In 10 per cent of people living with NF, they can become cancerous.
Brian, 64, has the most common form of the unpredictable condition, which mainly affects his sight: he has was born with a tumour called a plexiform on his eyelid.
"A plexiform is a bit like a jelly," he said. "They can be of any size from small to extremely large. Anywhere you've got nerves, you can generally have a benign tumour.
''I've probably got thousands of little neurofibromas across my body - on my torso, my hands, my legs and arms - everywhere."
At 18 months, Brian had his first operation on a tumour near his left eye. The surgery affected the muscles that control the eyelid and the tear glands, which left complications of their own.
The precision during surgery was not as accurate as it is today and by the time he was 20, he'd had up to 20 eye operations - he said he has lost track. But he hasn't had a major operation on his eye since 2010.
Not that he is free from the symptoms. "My eye gets more easily infected and painful because lack of tear glands doesn't allow dust and other particles to be washed away. And unfortunately, drinking dries you out, so I have to watch what's happening there.
About half of those affected by NF will have inherited it from one of their parents. Brian's oldest daughter has the condition. She has a large tumour on the back of her leg but has a successful career as a practice manager in Goulburn. Neither of her children appears to have the condition.
None of which has stopped the father of three from going on to become a technology a computer/digital technologies teacher in places like Orange, Singapore and Canberra, where he has often been supported by his students and staff - for which he is grateful.
Even though he is retired, Brian often gives guest talks about NF to Year 11-12 students doing biology. His youngest daughter, who is also a teacher, has even invited him to give presentations to her Year 5 class as they learn about diversity.
Over the years Brian has raised thousands of dollars for the Children's Tumour Foundation, which plays a vital role both in raising awareness of NF in the community and supporting of families and children who have the disease in all its forms.
It collates and provides information from and to a wide range of individuals and organisations and has played a key role in obtaining federal research funding for a series of projects such as these:
Earlier this month, the foundation held its Shine A Light campaign in which more than 120 monuments and landmarks lit up blue and green to shine a light on NF to raise awareness of the disease.
To find out more about its work or how to help, click HERE.
The foundation plays a vital role in raising awareness of NF in the community and supporting of families and children who have NF in all its forms.
It collates and provides information from and to a wide range of individuals and organisations and has played a key role in obtaining federal research funding.
To see just one of its research projects, click HERE.
