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Neurofibromatosis patient shines light on rare condition

​When Yessika Sutawijaya was 11 years old, her parents noticed the skin on her left leg started getting patchy and darker in colour. Her left leg was also weaker and growing faster than the right leg, causing her to walk with a limp. 

Living in Indonesia at that time, her worried parents decided to travel to Singapore for medical advice. After medical consultation, Yessika was diagnosed with Neurofibromatosis Type I, also known as NF1. NF1 is rare genetic condition that causes tumours to form on nerve tissue, with mild to severe symptoms. The diagnosis came as a shock as the family had no knowledge of the condition and did not know anyone with NF1.

Soon after diagnosis, Yessika underwent knee surgery to slow down the growth of her left leg. While successful in slowing down the growth, the surgery left her with a weakened knee which limited her social activities. 

Yessika, now 42, vividly recalls how her classmates would whisper behind her back about her condition and strangers would stare and shun her in public. She felt hurt and at times cried at home, questioning why she was afflicted with this rare condition. She was self-conscious about her appearance.

“I would always wear long pants to hide my legs and to prevent unkind remarks,” she confessed.

A new chapter

In 2005, Yessika moved to Singapore to pursue a career, and met the man who would become her husband in 2014.

“I thought I would be single all my life. But my husband proved me wrong and accepted me for who I am. He constantly looks out for me, encourages and motivates me.”
Yessika’s husband continues to be her pillar of strength.

Yessika and her husband have been married since 2016. In their free time, the couple enjoys long walks and hosting friends in their home. The couple do not plan to have children. 

“NF is a heredity condition and there is a 50% chance I would pass it on if I have children. I do not want to take the risk,” shared Yessika.

In 2019, Yessika had a bad fall. With her already weak knee and foot, the fall rendered her unable to walk long distances or stand for extended periods of time. She now uses a wheelchair to get around. These additional challenges only reinforced her determination to share her experiences in the hope that she can help others.

Shining a light on her experiences
Yessika and her husband at the Shine a Light on NF 2023 event.

Yessika told her story at the annual Shine a Light on NF event organised by NCCS. To mark World NF Awareness Month in May, NCCS joined the global movement to ‘Shine a Light on NF’ as part of efforts to raise awareness about NF in the community by lighting up buildings, bridges, monuments and landmarks in blue and green. NCCS also organised a series of talks for NF patients and their families to share the latest medical and research updates and tips to manage the condition.

“It’s a privilege to be able to share my story and give fellow patients hope that it is possible to overcome challenges and live life to the fullest, despite having a genetic condition,” said Yessika. 

Yessika has joined the NCCS Living with NF Support Group and looks forward to building a community of support. 
To manage and treat her condition, Yessika’s care plan includes regular follow-ups with a multidisciplinary team, including check-ins with genetic counsellors at NCCS’ Cancer Genetics Service. She stresses the importance of regular health checks for patients with NF to detect any unusual symptoms or growths so that treatment can be started early, which reduces the risk of complications and improves overall quality of life.

What is Neurofibromatosis (NF)?

NCCS joined the global movement to ‘Shine a Light on NF’ by lighting up buildings, bridges, monuments and other landmarks in Singapore in blue and green from 17 to 21 May 2023.

Neurofibromatosis (NF) is a genetic condition that causes tumours to grow on nerves in the spinal cord, brain and other parts of the body. NF includes Neurofibromatosis Type 1 (NF1) and all types of schwannomatosis, including NF2-related schwannomatosis (NF2), formerly known as Neurofibromatosis Type 2.

The most common type of NF is NF1, which is estimated to occur in one in every 2,500 individuals globally. NF1 is commonly associated with multiple light brown spots on the skin and the tendency to grow neurofibromas which are usually non-cancerous (benign), but can sometimes become cancerous. Early screening and diagnosis is key to enabling timely management and treatment of symptoms and complications leading to better outcomes for NF1 patients.