For decades, Yessika Sutawijaya hid her left leg beneath long pants, concealing the soft lumps that covered her skin—a visible reminder of the rare genetic condition she had lived with since birth.

Growing up in Indonesia, she remembers the stares, the whispers, the cruel gossip of classmates. “There was a moment when I came home crying, thinking, ‘Why did they do that? Why am I so different?’” she recalled.

Now 45, Sutawijaya has spent most of her life feeling utterly alone with neurofibromatosis type 1 (NF1)—until 2022, when everything changed.

A Life Defined by Hidden Struggles

NF1 is a genetic condition that causes tumours to grow along the nerves in the skin, brain, spinal cord, and other parts of the body. In Sutawijaya’s case, the benign tumours grew larger over time, weaving into the normal tissue of her leg and affecting her mobility. She now uses a wheelchair and a walking aid for brief moments of standing.

The condition worsened significantly in 2019 after a bad fall left her unable to walk or stand for extended periods. She gave up travelling on her own. Her leg and foot swelled so much that she can no longer wear shoes—only slippers.

“I wished I could wear a nice dress,” she said. “Now I can’t even wear shoes”.

In 2023, she was diagnosed with breast cancer—a complication that is tragically common for NF1 patients, who face a lifetime risk of up to 20 per cent.

The Moment Everything Clicked

For years, Sutawijaya was part of an international NF Facebook group, but she never met another person with the condition in real life. That changed in 2022 when she attended the National Cancer Centre Singapore’s Shine a Light on NF event.

For the first time in her life, she was surrounded by other people with NF.

“It was truly life-changing,” she said. “Knowing you are not alone on this journey can be truly life-changing, whether you are a child or an adult”.

The experience also shifted her mindset. For years, she had asked herself: “Why me? Out of thousands of people, why am I the only one who got NF?”

“But a few years back, I started asking, why not me? Everyone runs their own race and we all have our own struggles in this life. Since I’ve been given NF, how can I finish running my race more positively?” she said.

Building a Community from Scratch

That reframing spurred her to action. In August 2025, she co-founded the Neurofibromatosis Society Singapore (NFSS) with others living with NF, supported by clinicians from KK Women’s and Children’s Hospital and the National Cancer Centre Singapore.

The society now has around 40 members, including patients, caregivers, and healthcare professionals.

“I know it’s not easy. It feels very isolating,” Sutawijaya said. “We hope that with NFSS, we can help others on a similar journey find strength and live life fully, even in the face of challenges”.

Small Steps, Big Impact

With limited resources, getting the society’s website and social media channels up and running was already an “achievement,” she said. The group organises quarterly activities, an annual NF Day, and awareness initiatives. In time, they hope to expand into schools and hospitals and raise funds for families struggling with follow-up care.

The most rewarding part? Hearing members say: “I don’t feel alone anymore”.

“At the heart of the NFSS is to create a safe space for NF patients and their families, where we can support each other through happy and sad moments,” she said.

Looking Forward

Beyond NFSS, Sutawijaya is also a patient partner at the Lee Kong Chian School of Medicine’s Office of Patient Engagement, sharing her lived experience. She was recently awarded the SingHealth Inspirational Patient and Caregiver Award 2026.

Her NF diagnosis also led her to decide not to have children. “I don’t want to pass on my genes. There’s a 50 per cent chance of passing NF to my kids, and I just don’t have the heart to see them experience the same thing,” she said.

She considers herself fortunate that her husband Aris Chia understands and accepts her decision. “Even before we dated, I told him all about my condition because I don’t want to waste everyone’s time. It’s only fair to him,” she said.

To those living with NF who feel anxious about their progressive condition, Sutawijaya offers this message: “Don’t let it steal the joy of living. And remember, we (the NFSS) are here for you. Let’s walk this journey together”.

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For more information, visit the Neurofibromatosis Society Singapore at nfss.org.sg or follow them on Instagram @neurofibromatosissocietysg.