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 earlier campaign this month.
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.
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 connects people with NF to services and raises money to fund vital research, awareness and practical support for people with all types of NF.
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.
Over the past decade it has also hosted Cupid's Undie Run, where participants strip down to the minimum to raise money for others with the condition.
To find out more about its work or how to help, click HERE.
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