Singapore, 15 May 2023 – Affecting millions worldwide, Neurofibromatosis (NF) is a genetic condition that causes tumours to grow on nerves in the spinal cord, brain and other parts of the body. NF includes Neurofibromatosis Type 1 (NF1) and all types of schwannomatosis, including NF2-related schwannomatosis (NF2), formerly known as Neurofibromatosis Type 2.

The most common type of NF is NF1, which is estimated to occur in one in every 2,500 individuals globally. NF1 is commonly associated with multiple light brown (café-au-lait) spots on the skin and the tendency to grow neurofibromas which are usually non-cancerous (benign), but can sometimes become cancerous. Early screening and diagnosis is key to enabling timely management and treatment of symptoms and complications, which translates to better outcomes for NF1 patients.

Associate Professor Joanne Ngeow, Head, Cancer Genetics Service (CGS) and Senior Consultant, Division of Medical Oncology, National Cancer Centre Singapore (NCCS); Associate Professor of Genomic Medicine, Lee Kong Chian School of Medicine, Nanyang Technological University, said, “NF is a poorly-managed condition globally, as many affected individuals with complex symptoms may not seek medical attention, or when they do their primary care doctors do not refer them to a genetics service for management. There isn't a cure for neurofibromatosis, but signs and symptoms such a chronic pain due to the tumors pressing on nerves on the body, can be managed. It is important that NF patients receive care from a doctor trained in managing the condition, so they can maintain a good quality of life and ensure that any cancer risks are well-managed.”

Ms Yessika Sutawijaya was diagnosed with NF1 as a child. She was living in Indonesia when her parents noticed the skin on her left leg was darker in colour. The leg was also weaker and growing faster than Yessika’s other leg, causing her to walk with a limp. They came to Singapore to seek medical advice and she was diagnosed with NF1. The spots all over her body greatly affected Yessika’s self-confidence and limited her social activities when she was younger. Her left leg weakened over the years causing frequent falls. A bad fall in 2019, has caused Yessika to use a wheelchair ever since.

Today, Yessika, 42, has come to terms with her condition. She joined the NCCS Living with NF Support Group to help other NF patients by sharing her own experience and give them hope that it is possible to overcome challenges and live life to the fullest despite the genetic condition.

To mark World Neurofibromatosis Awareness Month in May, NCCS is once again joining the global movement to ‘Shine a Light on NF’ as part of efforts to raise awareness about NF in the community by lighting up buildings, bridges, monuments and other landmarks in blue and green. From 17 to 21 May 2023, various locations in Singapore will be lit up in blue and green. On 20 May 2023, NCCS is also organising a series of talks specially for NF patients and their families to share latest medical and research updates and tips to manage the condition.

“Through the ‘Shine A Light on NF’ walk, we were able to raise awareness and funding to conduct a study to understand the needs and concerns of patients and families with NF in Singapore. We found out that their key concerns include chronic pain and the need for multidisciplinary holistic care. This knowledge will allow us to find solutions and provide them with the support they need,” added Assoc Prof Joanne Ngeow.

Ms Sarah, was 17 years old when she first discovered a painless lump in her underarm. When she was diagnosed with NF1, it came as a shock as she did not experience any pain or symptoms. She had observed a large café-au-lait spot on her body but did not think anything of it. Her family was unaware that it was a common NF1 symptom, as they had never heard of the genetic condition before. Over the years, Sarah has had several operations to remove benign tumours from different parts of her body and she has lost sensation in two fingers as a result of nerve damage caused by a tumour.

Now aged 53, Sarah has two sons, and her elder son was diagnosed with NF1 at birth while her younger son will undergo evaluation this year. Both sons are receiving care from NCCS Cancer Genetics Service to help them with any concerns or queries. Sarah wanted her sons to be genetically tested to see if they are NF1 carriers so that they would know what to expect, manage symptoms and make plans for the future.

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Shine a Light on NF locations

For media queries and interviews with patients, please contact:

Ms Cheryl Sng
Corporate Communications
National Cancer Centre Singapore
Email: cheryl.sng.x.p@nccs.com.sg

About the National Cancer Centre Singapore

The National Cancer Centre Singapore (NCCS) is a leading national and regional tertiary cancer centre with specialists who are experts in treating cancer. NCCS attends to the majority of cancer cases in Singapore’s public healthcare sector. In addition to offering holistic and multidisciplinary oncology care, our clinicians and scientists collaborate with local and international partners to conduct robust, cutting-edge clinical and translational research. To achieve its vision of being a global leading cancer centre, NCCS offers world-class care and shares its depth of experience and expertise by training local and overseas medical professionals.

To meet growing healthcare needs, the new NCCS building opened in 2023 with increased capacity and expanded facilities dedicated to cancer care, rehabilitation, research and education. To give patients the best treatment outcomes, advanced and innovative treatment such as proton therapy is offered at the new Goh Cheng Liang Proton Therapy Centre at NCCS.

For more information, please visit: www.nccs.com.sg