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.
When Yessika Sutawijaya, a 45-year-old freelance researcher, first met another person with neurofibromatosis (NF), it inspired her to co-found a support group for those living with the rare genetic condition. Growing up in Indonesia, Sutawijaya concealed her left leg, which was covered with plexiform neurofibromas, behind long pants to avoid the stares and gossip of her classmates.
Despite her challenges, she now advocates for others with NF, believing that making her story visible can help them feel seen and heard. The Neurofibromatosis Society Singapore (NFSS), co-founded in August 2025 with support from KK Women’s and Children’s Hospital (KKH) and National Cancer Centre Singapore (NCCS), currently has around 40 members.
NFSS aims to provide a sense of community and support for patients, caregivers, and healthcare professionals affected by NF, which affects one in 3,000 people globally.
Written by urgent.news from CNA - Singapore's reporting — not their text. Machine-written — it may contain errors, so check the original before relying on it.
