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.
Yessika Sutawijaya, 45, has spent years living with neurofibromatosis type 1 (NF1) and now aims to build a community for others facing the same rare genetic condition. Growing up in Indonesia, she endured stigma and isolation due to the visible skin changes caused by plexiform neurofibromas. Concluding her everyday routine was wheelchair-bound and requiring assistance, Sutawijaya sought connection in the form of a support group.
In August 2025, she co-founded the Neurofibromatosis Society Singapore (NFSS) alongside others living with NF, in partnership with healthcare professionals and organizations. NF affects approximately one in 3,000 people globally, and the society’s goal is to offer support to the estimated 40 members it currently has. Sutawijaya's condition worsened in 2019, necessitating the use of a wheelchair and altering her ability to wear fashionable clothing.
She also carries an increased risk of breast cancer and other cancers due to NF1. Sutawijaya's husband, Aris Chia, has been her steadfast supporter while she navigates her health challenges.
Written by urgent.news from Channel News Asia's reporting — not their text. Machine-written — may contain errors; check the original before relying on it.
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