Dialog Box

Children's Tumour Foundation of Australia

Janu's Story

My family migrated from Sri Lanka when I was 18 months old, so I spent much of my childhood balancing Australian customs with the traditions of our culture. Our family was fortunate to have built a strong support network, but after I was diagnosed with NF, I realised the blessing of unity that this community provided did not always apply to me.  I was different and sat firmly outside of the expected mould.

As a Tamil girl, there was an expectation of being beautiful, obedient and inconspicuous, with flawless, fair skin. I did not fit this idealised image. I was uncoordinated and self-conscious, regularly in need of medical attention to monitor my symptoms and eventually developed many external tumours on my face, arms and hands. 

Growing up, I struggled a lot at school. I had learning difficulties and a lack of coordination.

In primary school, nobody wanted to pick me for their team because I was so awkward, and the kids used to make fun of me. As a teenager, I was told by a teacher not to bother applying for university."

I refused to let this stop me achieving my dreams. I overcame learning difficulties that plagued my school days and graduated with a Diploma in Network Engineering and followed it up with a Degree in Digital Media. I now works as a Product Analyst at uno Home Loans.

When it became apparent there was something different, questions came up about my appearance. Also, many felt it was their place to offer unsolicited advice. While the advice was intended to be helpful, it had the opposite effect. 

By zeroing in on my flaws, it only served to make me feel more isolated and alone.

The transition to adulthood was a rough road. I fell into a medical abyss – there was no proper handover and, at the time, no adult NF clinic. My physical condition worsened, as did my mental health.

There are only so many stares, intrusive questions or people avoiding the seat next to you that a person can take. In some cases, people would demand to know why I had not "done something" about my NF. This led me down a path of severe depression and anxiety. To the point where I wished I was never born and even considered ending it all. 

As I reached my early-20's, I decided it was time to take control of my life. I opened up about my NF and found that by doing this, so many new and amazing friends came into my life. 

It made me realise that I'm am worthy of people's love and friendship."

It took another 15 years to "come out" to the Tamil community, but when I did, it was in spectacular style! 

In 2019, I connected with the Children's Tumour Foundation. I was scheduled to undergo an operation to surgically remove hundreds of cutaneous neurofibromas from my head, neck and shoulders that were causing pain and discomfort. The lengthy procedure would mean I would have to shave my head. So, instead of feeling sad about losing my hair, I decided to turn a potential negative into a positive. 

With the support of close friends, I shaved my head to help raise money for the CTF. 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.

By sharing the reason for my fundraising, I was able to have a conversation with everyone I knew in one fell swoop. It allowed me to lift the huge burden of secrecy and support others in the NF community at the same time. I blew my initial $3000 goal out of the water within 48 hours, received an outpouring of support and racked up a healthy $16,000 in fundraising for the CTF by the end of the month. It made me realise how much people cared about and loved me."

I am not alone in my experience. The Tamil community may be conservative, but they are by no means the only group to share these beliefs. Even modern western societies put beauty on a pedestal. I hope that by sharing my story and experience, I can help in breaking down cultural and social behaviours that see a person's imperfections as something to be feared or avoided.

Since "coming out", I have decided to become a NF Ambassador for the CTF; using my story to continue the fight by helping to raise awareness of the condition. I have become a regular speaker at events run by the organisation, and now mentoring other young adults by giving a voice to the social isolation and anxiety of living with NF through videos. 

I never intended on being a spokesperson for young people with NF. But through a series of critical and somewhat life-changing moments, it is a role I have now embraced. I want to be an agent for change, but my message is clear. Everyone has their own path to follow, their own obstacles to overcome, and their own demons to face. It took me the better part of three decades to find the strength, so the moment must be right for you. Education is the key to understanding."