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Clock Tower to change hue to mark rare genetic condition

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Newcastle City Hall Clock Tower will glow blue and green on Friday 17 May… to mark World NF Awareness Day.

The as-yet incurable genetic condition called Neurofibromatosis (NF) affects 13,000 Australians each year, causing tumours to form on nerves throughout the body.

NF can lead to a range of significant health issues including blindness, deafness, bone abnormalities, disfigurement, chronic pain, learning difficulties and even cancer.

Every three days a child is born with NF in Australia.

Recent findings show 23% of Australians suffering from NF are waiting more than four years for a diagnosis, which is then compounded by a lack of knowledge amongst healthcare professionals, and long waiting times.

Hunter Valley youngster Tom Smith and his family know all too well the cost NF has on sufferers and their families.

The 10-year-old and his mother Lynda have been carrying the burden of the condition for the past eight years, regularly travelling from the region for access to specialist care in Newcastle and Sydney.

Hunter youngster Tom Smith. World NF Awareness Day, 17th May.

Tom was diagnosed with NF in 2016, the first in his family to have the genetic condition.

Since then his childhood has been filled with terms like plexiform neurofibroma, displasia, dural thickening, MRIs, surgery and genetics.

Tom and his family receive support from Children’s Tumour Foundation, the only patient advocacy and support service for those affected by the condition.

From mental health burdens on the patients and families, to large monetary impacts, CTF is committed to raising awareness of the condition.

The signs, symptoms, and management of each type of NF are different and there is no way to predict how mildly or severely someone will be impacted.

Roughly half of all cases arise in families with no history of NF and it can affect anyone regardless of ethnicity, gender, or family history.

Hunter’s Tom Smith and mum Lynda.

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