Medical Mysteries
Patient-led group provides social, community support for neurofibromatosis sufferers
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Neurofibromatosis sometimes manifests itself in the growth of thousands of benign tumours on the body and face, which can result in social stigma and misunderstanding for patients.
PHOTO: TNP FILE
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- Neurofibromatosis Society (NFS) Singapore, registered in August 2025, supports individuals with neurofibromatosis (NF), a rare genetic condition causing tumours.
- NFS aims to provide emotional, psychosocial and financial support, addressing isolation and stigma often experienced due to underdiagnosis and visible symptoms.
- Co-founders and medical professionals emphasise the importance of peer support in addition to medical treatment to improve the lives of those with NF.
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SINGAPORE - Patients with a rare genetic condition called neurofibromatosis have come together to provide emotional, psycho-social and financial support for one another as well as others with the disorder.
They have formed a group, called the Neurofibromatosis Society (NFS) Singapore, which was registered with the Registry of Societies in August.
Neurofibromatosis, or NF, is a rare genetic condition that causes the development of non-cancerous tumours affecting nerves on the skin, brain, spinal cord and other parts of the body.
In Singapore, the number of individuals with NF is estimated to be in the hundreds, with NF Type 1 (NF1) being the most common diagnosis. This condition manifests through symptoms such as multiple flat, light brown spots on the skin, known as “cafe au lait” spots, and neurofibromas – soft bumps under or on the skin.
These patients are primarily treated at the National Cancer Centre Singapore and KK Women’s and Children’s Hospital (KKH), where they receive comprehensive care from multidisciplinary teams.
A much rarer form of NF is the Type 2 variant (NF2), which causes non-cancerous tumours to develop around nerves in the brain and spinal cord. Its symptoms include hearing loss and balance problems, and it often begins in the late teens or early 20s.
As NF is often underdiagnosed, many patients live with feelings of isolation and a lack of information, made worse by the social stigma and misunderstanding that come with the visible changes in appearance caused by the condition.
NFS co-founder Lai Chee Chong, 45, said: “As a child, living with NF affected my self-confidence. I found it difficult to make friends because people thought my condition was contagious. Now, I want to help create more awareness about NF.”
Ms Yessika Sutawijaya, 44, who is also a co-founder, said: “There is power in connection. Knowing you are not alone on this journey can truly be life-changing, whether you are a child or adult. We hope that with NFS Singapore, we can help others on a similar journey find strength and live life fully, even in the face of challenges.”
Dr Nikki Fong, a consultant with the Genetics Service at KKH, said: “Beyond medical treatment, young patients and their families need continual emotional and mental support. This group will play a pivotal role in addressing those unseen needs, complementing the clinical journey with peer and psychological support.”
