Singapore Patient Establishes Support Network for Rare Genetic Condition NF1

What Happened

Yessika Sutawijaya, a 45-year-old freelance research operations professional, co-founded the Neurofibromatosis Society Singapore (NFSS) in August 2025. The organization serves as a support network for individuals diagnosed with neurofibromatosis (NF), a rare genetic condition that Sutawijaya managed in isolation for several decades. The society currently comprises approximately 40 members, including patients, medical professionals, and caregivers. For her advocacy and resilience, Sutawijaya was recognized with the SingHealth Inspirational Patient and Caregiver Award 2026.

Background

Neurofibromatosis type 1 (NF1) is a genetic disorder characterized by the growth of tumors along nerves in the skin, brain, and spinal cord. While these tumors are typically benign, they can cause significant physical changes and mobility issues. In Sutawijaya’s case, plexiform neurofibromas in her left leg have impacted her ability to walk, requiring the use of a wheelchair and walking aids. Globally, the condition affects roughly one in 3,000 people. While Singapore lacks formal data on the total number of residents living with NF1, specialized treatment is primarily centered at KK Women’s and Children’s Hospital and the National Cancer Centre Singapore.

Why It Matters

The establishment of NFSS addresses a gap in social support and public awareness for NF patients in Singapore. Sutawijaya noted that throughout her childhood in Indonesia and her early adult life, she faced social stigma and gossip due to visible disfigurement. By creating a formal society, advocates hope to foster a community where patients do not have to hide their condition. Clinical experts from the National Cancer Centre Singapore indicate that patient-led initiatives are vital for addressing the unique challenges faced by those with NF, beyond clinical medical treatment.

Key Facts

• NFSS was established in August 2025 with assistance from clinicians at KKH and NCCS.
• Neurofibromatosis type 1 affects approximately one in 3,000 individuals worldwide.
• The condition causes benign tumors to grow on nerve tissue, which can lead to mobility impairment and disfigurement.
• Sutawijaya, a Singapore citizen since moving from Indonesia in 2005, uses a wheelchair and freelance work to manage her lifestyle with the condition.
• The SingHealth Inspirational Patient and Caregiver Award 2026 was granted to Sutawijaya for her work in patient advocacy.