May is Neurofibromatosis (NF) awareness month, a time to reflect on the challenges faced by individuals living with this genetic condition and to raise awareness about its impact. Janu Dhayanathan, a passionate advocate and NF warrior, is using her voice to shed light on the realities of living with NF, a condition that affects the nervous system and can lead to benign tumours that may become cancerous. Janu’s journey is one of resilience, vulnerability, and advocacy, as she aims to change the way we perceive those with visible and invisible differences.
What is Neurofibromatosis?
Neurofibromatosis is a genetic condition that causes tumours to form wherever there are nerve cells in the body. Though these tumours are generally benign, they can become cancerous, requiring constant monitoring. The condition is unpredictable, with no clear path of progression or guarantee of where the tumours will grow. For many, this unpredictability is the most terrifying part. Along with physical challenges like scoliosis, cognitive difficulties, and social isolation, NF can also cause emotional and mental health struggles. Individuals with NF may experience symptoms that affect their mobility, hearing, and vision. But one of the most significant hurdles is the psychological toll of living with a visible difference.
“While NF is typically passed down from parent to child, my case was different since my parents did not have the condition,” Janu explains. This means she was born with a spontaneous mutation of NF, making her a 1-in-3000 case. Though the condition is typically diagnosed in early childhood, Janu’s journey began at the age of 9 when she visited a paediatrician for asthma-related issues.
“My mother noticed small brown patches on my skin, which were initially mistaken for birthmarks,” she revealed.
“Growing up in a South Asian family, I was told to keep my diagnosis a secret.” This secrecy, born from fear of societal judgement, caused more harm than good. As her tumours grew, it became impossible to hide the condition, leading to feelings of shame and social isolation. She struggled with depression, anxiety, and the cruelty of others, but the psychological burden was the heaviest. With a lack of representation and support, she felt like she didn’t belong anywhere.
“Western beauty standards didn’t fit me, and I didn’t have anyone in my family with NF to relate to,” she recalls.
For years, Janu Dhayanathan wore long sleeves to hide the spots on her skin, unsure of how to manage her emotions and anxiety. But everything changed in 2019 when she made the courageous decision to shave her head to remove tumours from her scalp. In doing so, she began a fundraiser for the Children’s Tumour Foundation (CTF), the leading organisation supporting NF research. What followed was a wave of support.
“I realised I had been hiding for so long, depriving myself of so much love,” Janu shares.
Her initial goal for the fundraiser was $3,000, but within 48 hours, she had surpassed that goal. By the end of the month, the total reached an incredible $16,000.
“When I shared my story, the outpouring of love and support was overwhelming,” she says. This marked a turning point for Janu, who was later invited to become an official ambassador for NF. Initially hesitant, she realised that she could be the representative she had longed for in her own journey.
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Through her work with the media, including appearances on TV, Janu has seen the power of forgiveness. One of her former bullies reached out to her on Facebook, not to apologise but to acknowledge the pain he had caused. Janu, who had worked through therapy to forgive those who had hurt her, responded with grace.
“Forgiveness is about letting go of negative emotions,” she explains.
Now, as a NF ambassador for CTF, her work revolves around mentoring young individuals living with NF as well as speaking at events to create awareness and fight the stigma. Her advocacy work has also led to important conversations around how the South Asian community can better support individuals with NF.
“In films, people with visible differences are often shown as ‘villains’ or something to be feared,” she says. “This attitude needs to shift, and it’s essential that the media showcase a diverse range of looks.”
Janu encourages the South Asian community to get involved in raising awareness for NF.
“Don’t feel ashamed of what makes you different,” she advises. “You don’t need to tell everyone, but you also don’t need to hide it.”
She emphasises that every case of NF is unique, where some individuals may live with tumours that are visible, others face challenges that are invisible, such as cognitive or internal tumours, which deserve equal compassion and support. Janu Dhayanathan
For those looking to make a tangible impact, Janu suggests visiting the Children’s Tumour Foundation website to donate or organise a fundraiser. The funds go directly toward research and supporting families who might not have the resources to manage the condition.
As Janu Dhayanathan reminds us, “If there’s something different about you, don’t feel ashamed. Embrace it, and know that you are not alone.”
READ MORE: How Dr Kiran Puttappa is championing diversity in healthcare
