Now 37, Janu recalls spending much of her life in the “shadows”, never admitting to anyone the difficulties she faced from both a health and an emotional perspective. She started to develop external cutaneous neurofibromas as she reached puberty which only grew in number and size as she got older. Noticeable and disfiguring, she often felt isolated and alone, unable to share with others why or even connect with those most likely to understand and empathise, the NF community.
She did not let it define her life, though. She overcame the learning difficulties that had plagued her school days and graduated with a Diploma in Network Engineering and followed it up with a Degree in Digital Media. She now works as a Product Analyst at uno Home Loans.
In 2019, Janu connected with the Children’s Tumour Foundation (CTF), the leading, and only national charity in Australia supporting people with NF. She was scheduled to undergo an operation to surgically remove hundreds of cutaneous neurofibromas from her head, neck and shoulders that were causing pain and discomfort. The lengthy procedure would require her to shave her head, so instead of feeling dejected about losing her hair, she decided to turn a potential negative into a positive.
With the support of family and close friends, she shaved her head to help raise money for the CTF and more specifically, an Australian-run research trial that could change the way patients with NF are treated. It was a life-changing decision with many unexpected benefits. Not only did she raise over $16,000 for the trial within a single month, it also liberated her from many invisible bonds.
She chose that moment to share her experience of NF with her wider family, friends and colleagues in a positive way. She was finally free to embrace and talk about every part of herself and feel proud. At no point did she ever expect to raise as much money as she did, but more importantly it was the first step towards breaking down cultural and social behaviours that see a person’s imperfections as something to be feared or avoided. Her condition had become both unifying and empowering. She even live-streamed the event to ensure everyone who donated could be part of the experience.
Since then, Janu has expressed a desire to be a NF Ambassador, using her story to continue the fight by helping to raise awareness of the condition. She has become a regular speaker at events run by the CTF and is now mentoring other young adults by giving a voice to the social isolation and anxiety of living with NF through video.