The Jacaranda Water Tower at Underwood will be lit up in blue and green tomorrow night in support of neurofibromatosis (NF) Awareness Month.
It’s one of 125 buildings, monuments and landmarks across Australia which will be illuminated this month to spark a national conversation about a genetic condition that impacts over 50,000 Australians.
The Children’s Tumour Foundation (CTF) says last year close to 70 locations were lit up and the momentum in the support of the cause has more than doubled this year.
Considered one of Australia’s most commonly diagnosed genetic neurological conditions, NF is a set of three complex conditions that cause tumours to form on nerve cells throughout the body.
These tumours can lead to physical differences, blindness, deafness, learning difficulties, chronic pain, scoliosis and in 10% of people living with NF these tumours can become cancerous.
There is no cure and treatment options are limited.
Over 10,000 people are living with NF in Australia and a child is born every three days with the condition.
The CTF estimates that over 50,000 Australians are directly impacted by NF with parents, siblings and carers also managing the realities that come with loving and caring for someone with NF.
It is impossible to predict how mild or severe the visible and invisible impact of NF will be on a person.
Each person’s journey is different, and over half of all cases arise in families with no history of the condition.
As there is no cure and treatment options are limited, those diagnosed can spend much of their lives in a state of limbo which can lead to feelings of social isolation, anxiety and depression.
The term ‘scanxiety’ is often used to describe the worry that comes with yearly, sometimes multiple times a year, monitoring for new and existing tumours or secondary health implications.
21 year old Jasmine Le Tisser works as an intern at CTF, she joined the team to help enrich the content of the organisation by drawing on her own lived experience with NF.
In her work for CTF Jasmine has been responsible for securing the light up locations set to shine blue and green throughout May.
Jasmine says, “As a child I felt so alone, I hunted social media high and low for others who had neurofibromatosis, like me, but I never had any luck.”
“I am so passionate about coordinating lighting buildings nationwide in blue and green, because I want all those little me’s, their families and friends to never feel alone in their journey, but also make the public aware that this condition exists.”
But through the efforts of organisations like the CTF, they are able to find support and a sense of community.
The CTF is Australia’s only dedicated support service at the ready to provide individualised information, resources, opportunities to connect with peers and links to professional services.
Chief Executive Officer of the Children’s Tumour Foundation, Leanne Dib says, “Those with visible signs of NF struggle to be seen as more than just their NF, while patients whose NF is invisible struggle to make others understand, but when we Shine a Light on NF we improve understanding of the signs and symptoms and educate around the diagnosis and treatment.”
There are many ways Australians, as well as schools, pre-schools and businesses looking to get involved with NF Awareness Month throughout May, can show their support.
Allies are encouraged to go blue and green tomorrow by wearing a blue and green ribbon, or boldly dare to shine by wearing blue and green eyeshadow throughout the month.
To rally for government support, you can also obtain a pledge from federal and state MPs, as well as local mayors or city councillors. Visit www.ctf.org.au/outoftheshadows to find out more.
