Living with a rare genetic disorder that caused visible tumors and mobility challenges, Yessika Sutawijaya spent years feeling alone. Now, she is transforming that experience by co-founding Neurofibromatosis Society Singapore, giving patients and caregivers a place to connect, share, and find strength together.
- NF1 causes benign tumors that can affect mobility and appearance
- Yessika co-founded Singapore’s first patient-led support group for NF
- The society links patients, caregivers, and healthcare experts
What happened
Yessika Sutawijaya was diagnosed with neurofibromatosis type 1 (NF1), a rare genetic disorder marked by benign tumors growing along nerves and skin. Over time, these tumors caused visible disfigurement on her left leg and significantly affected her ability to walk, eventually requiring a wheelchair and walking aids for mobility. Despite these challenges, Yessika concealed her condition to avoid stigma and protect her family’s privacy.
After decades of isolation and limited awareness about NF1, Yessika co-founded Neurofibromatosis Society Singapore (NFSS) in August 2025. The society was established with the support of clinicians and healthcare organizations, aiming to create a community where individuals with NF1 and their caregivers can find mutual support and access resources. Today, NFSS includes around 40 members, including patients and healthcare professionals collaborating to improve lives.
Why it feels good
For Yessika, turning her own struggles with NF1 into a source of strength has been both healing and empowering. By sharing her story, she hopes to break down stigma and raise awareness of this often misunderstood condition. Being part of a supportive community reassures members they are not alone, which can be a life-changing realization in managing a chronic and incurable disease.
The establishment of NFSS also brings hope for better patient care. With expert guidance and collaboration from medical professionals at leading local hospitals, the society advocates for improved support specifically tailored to the unique needs of NF1 patients. This partnership marks a progressive step toward more compassionate and comprehensive care for the community.
What to enjoy or watch next
The Neurofibromatosis Society Singapore welcomes new members including patients, caregivers, and healthcare providers who want to participate in building this growing community. Their activities and support efforts aim to provide connection, education, and emotional support for those living with NF1.
Looking ahead, efforts to raise public awareness about neurofibromatosis and increase understanding will continue. Sharing personal stories like Yessika’s helps foster empathy and dispel misconceptions. Individuals interested in learning more or contributing to the cause can look out for NFSS events and initiatives that highlight the journeys and resilience of those affected.