DistantNews
Support us
Woman with Rare Genetic Condition Builds Community After Decades of Isolation
🇸🇬 Singapore /Health & Science

Woman with Rare Genetic Condition Builds Community After Decades of Isolation

From CNA · () English

Translated from English, summarized and contextualized by DistantNews.

At a glance

In-depth Named sources New plan
  • Yessika Sutawijaya, who has neurofibromatosis type 1 (NF1), co-founded the Neurofibromatosis Society Singapore (NFSS).
  • She aims to provide support and community for others living with the rare genetic condition, which she experienced in isolation for decades.
  • Sutawijaya hopes her visibility will help reduce stigma and empower other patients.

For decades, Yessika Sutawijaya lived with neurofibromatosis type 1 (NF1), a rare genetic condition, often in isolation. Now, the 45-year-old is channeling her experiences into building a community for others facing similar challenges.

Sutawijaya's NF1 causes benign tumors, known as plexiform neurofibromas, to grow along nerves. In her case, these tumors have woven into the tissue of her left leg, affecting her mobility and causing visible disfigurement. She relies on a wheelchair and a walking aid. Growing up in Indonesia, she faced stigma and stares from classmates, leading her to conceal her condition.

"I think they are afraid of the unknown because people may gossip. I’m still half and half about it, but my mum strongly rejected it. She doesn’t want that to affect me," Sutawijaya said, explaining her initial hesitation to have her leg photographed for the story.

I think they are afraid of the unknown because people may gossip. I’m still half and half about it, but my mum strongly rejected it. She doesn’t want that to affect me.

— Yessika SutawijayaExplaining her family's concerns about public attention to her condition.

After moving to Singapore in 2005 and becoming a citizen, Sutawijaya decided that making her story visible was crucial. "If my weakness can be strength for others, if I can help others, why not?" she stated. This conviction led her to co-found the Neurofibromatosis Society Singapore (NFSS) in August 2025 with fellow NF patients, supported by clinicians.

NFSS aims to offer the support and community that Sutawijaya herself lacked for so long. She hopes the organization will help other patients find strength and navigate their condition, fostering a sense of belonging and understanding. Sutawijaya's efforts were recognized with the SingHealth Inspirational Patient and Caregiver Award 2026.

If my weakness can be strength for others, if I can help others, why not?

— Yessika SutawijayaHer motivation for sharing her story and advocating for NF patients.
DistantNews Editorial

Originally published by CNA in English. Translated, summarized, and contextualized by our editorial team with added local perspective. Read our editorial standards.

More Stories

From Our Blog