Growing up with a rare genetic condition called neurofibromatosis type 1 (NF1), Yessika Sutawijaya learnt that some things were better kept out of sight.

For years, the 45-year-old has concealed her left leg beneath long pants. The skin is covered with a network of soft lumps known as plexiform neurofibromas.

Along with skin changes, NF1 can cause tumours to grow along the nerves in the skin, brain, spinal cord and other parts of the body. The tumours are usually not cancerous.

In Sutawijaya’s case, the benign tumours grew larger over time and have woven into normal tissue in her leg, affecting her mobility and causing visible disfigurement. She uses a wheelchair to get around and a walking aid to assist with brief moments of standing and walking.

When CNA Women asked to photograph her for this story, she requested that her left leg not be shown. Her family worried that doing so could potentially lead to negative attention, and she wanted to respect their wishes.

“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,” she said.

Sutawijaya, who works freelance in research operations, understands those fears. Growing up in Indonesia, she remembers the stigma. There was little public awareness of neurofibromatosis back then.

“I remember my classmates staring at my leg and gossiping. There was a moment when I came home crying, thinking, ‘Why did they do that? Why am I so different?’,” said Sutawijaya, ...