Living with neurofibromatosis: How one woman helped build a support community in Singapore
Yessika Sutawijaya, who lives with the rare genetic condition neurofibromatosis type 1, has co-founded a support group in Singapore to help others navigate the physical and social challenges of the disease. Her efforts aim to combat the stigma and isolation often associated with visible disfigurement.
Why it matters
This story highlights the importance of patient advocacy and community support systems for individuals living with rare, stigmatized medical conditions.
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 hopes that Neurofibromatosis Society Singapore can help other patients find strength and support as they navigate their condition. (Photo: Eveline Gan)
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.
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