She spent decades alone with a rare genetic condition – now she’s building a community for others like her
It took decades for Yessika Sutawijaya to meet another person with neurofibromatosis. The experience inspired the 45-year-old to co-found a support group so others with the rare condition can find the support and community she never had.
Yessika Sutawijaya hopes that Neurofibromatosis Society Singapore can help other patients find strength and support as they navigate their condition. (Photo: Eveline Gan)
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Growing up with a rare genetic condition called neurofibromatosis type 1 (NF1), Yessika Sutawijaya learnt that some things were better kept out of sight.
For years, the 45-year-old has concealed her left leg beneath long pants. The skin is covered with a network of soft lumps known as plexiform neurofibromas.
Along with skin changes, NF1 can cause tumours to grow along the nerves in the skin, brain, spinal cord and other parts of the body. The tumours are usually not cancerous.
In Sutawijaya’s case, the benign tumours grew larger over time and have woven into normal tissue in her leg, affecting her mobility and causing visible disfigurement. She uses a wheelchair to get around and a walking aid to assist with brief moments of standing and walking.
When CNA Women asked to photograph her for this story, she requested that her left leg not be shown. Her family worried that doing so could potentially lead to negative attention, and she wanted to respect their wishes.
“I think they are afraid of the unknown because people may gossip. I’m still half and half about it, but my mum strongly rejected it. She doesn’t want that to affect me,” she said.
Sutawijaya, who works freelance in research operations, understands those fears. Growing up in Indonesia, she remembers the stigma. There was little public awareness of neurofibromatosis back then.
“I remember my classmates staring at my leg and gossiping. There was a moment when I came home crying, thinking, ‘Why did they do that? Why am I so different?’,” said Sutawijaya, who moved to Singapore in 2005 to pursue a career opportunity and is now a Singapore citizen.
SHARING HER STORY TO ADVOCATE FOR NF PATIENTS
Now, decades later, Sutawijaya believes that making her story visible is important. It is one way to help others living with the incurable, often-misunderstood disease be seen and heard.
“If my weakness can be strength for others, if I can help others, why not?” she said.
That desire to help led her to co-found Neurofibromatosis Society Singapore (NFSS) with others living with NF in August 2025.
The society was established with support from clinicians at KK Women’s and Children’s Hospital (KKH) and National Cancer Centre Singapore (NCCS), and in collaboration with organisations and corporate partners.
According to Sutawijaya, NFSS currently has around 40 members, including patients, caregivers and healthcare professionals.
“There is power in connection. Knowing you are not alone on this journey can be truly life-changing, whether you are a child or an adult,” she said.
Globally, an estimated one in 3,000 people live with NF1, said Clinical Assistant Professor Chiang Jianbang, consultant at NCCS’ Division of Medical Oncology.
There is, however, currently no formal data on the number of people living with NF1 – the most common form of neurofibromatosis – in Singapore. Patients here are primarily treated at multidisciplinary clinics at NCCS and KKH.
“As NF patients face unique challenges, there’s more that can be done to ensure NF patients receive the support they need, and this is where patient-led initiatives like NFSS play an important role,” said Clinical Asst Prof Chiang, one of the doctors who worked closely with the co-founders to establish the society.
LIVING WITH UNCERTAINTY AND CHALLENGES
Sutawijaya’s condition worsened significantly in 2019 when she suffered a bad fall and could no longer walk or stand for extended periods.
That meant giving up what she used to enjoy, such as travelling on her own. As the swelling in her leg and foot increased, she can no longer buy footwear she likes.
“There were times back then when I wished I could wear a nice dress,” she said. “Now I can’t even wear shoes, so I just wear slippers.”
In 2023, Sutawijaya was diagnosed with breast cancer. She has since completed surgery and radiotherapy.
According to Clinical Asst Prof Chiang, the lifetime risk of breast cancer for someone with NF1 can be as high as 20 per cent. They are also at an increased risk of other cancers, such as sarcomas (a group of cancers that originate in the bones and connective tissues).
Plexiform neurofibromas may also turn cancerous, with a lifetime risk of up to 16 per cent, Clinical Asst Prof Chiang added. Patients are encouraged to undergo regular follow-ups, sometimes involving a whole-body MRI scan to monitor for any complications.
Her NF diagnosis led to her decision not to have children. “I don’t want to pass on my genes. There’s a 50 per cent chance of passing (NF) to my kids, and I just don’t have the heart to see them experience the same thing,” she said.
She considers herself fortunate that her husband Aris Chia, 47, understands and accepts her decision.
“Even before we dated, I told him all about my condition because I don’t want to waste everyone’s time. It’s only fair to him,” she said. He has remained her constant supporter over the years.
CONNECTING WITH OTHER NF PATIENTS
For much of her life, living with NF made her feel alone. Although Sutawijaya was part of an international NF Facebook group, she did not meet another person with the rare condition in real life until 2022, when she attended NCCS’ Shine a Light on NF event.
For the first time in her life, Sutawijaya was surrounded by other people with NF, and she was struck by a sense of belonging.
The experience also shifted her mindset. For a long time, she had asked herself: “Why me? Out of thousands of people, why am I the only one who got NF?
“But a few years back, I started asking, why not me? Everyone runs their own race and we all have our own struggles in this life. Since I’ve been given NF, how can I finish running my race more positively?” she said.
Sutawijaya said that reframing her mindset spurred her to advocate for others with NF.
“I know it’s not easy. It feels very isolating. We hope that with NFSS, we can help others on a similar journey find strength and live life fully, even in the face of challenges,” she said.
NFSS patient volunteers organise quarterly activities for members, an annual NF Day and awareness initiatives.
Given limited resources, getting a website and social media channels up and running was an “achievement”, said Sutawijaya. Information about NF, patient stories and updates on activities are shared through these platforms.
In time, the society hopes to expand its awareness work into schools and hospitals, and raise funds to help families struggling with follow-up care.
Sutawijaya said it is heartening to hear members say: “I don’t feel alone anymore”.
“At the heart of the NFSS is to create a safe space for NF patients and their families, where we can support each other through happy and sad moments,” she added.
Beyond NFSS, Sutawijaya is also a patient partner at the Lee Kong Chian School of Medicine’s Office of Patient Engagement Voices programme, where she shares her lived experience as a patient.
She was recently awarded the SingHealth Inspirational Patient and Caregiver Award 2026. The award recognises patients and caregivers for their strength, courage and resilience in the face of healthcare challenges, as well as outstanding patient support groups and healthcare volunteers that have provided invaluable support to patients and caregivers.
Looking ahead, Sutawijaya hopes that greater awareness of NF will one day foster a more inclusive society.
To those living with NF who feel anxious about the progressive nature of their condition, she said: “Don’t let it steal the joy of living. And remember, we (the NFSS) are here for you. Let’s walk this journey together.”
CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg.
Source: CNA/pc
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