Neurofibromatosis patient shines light on rare condition

By: Cheryl Sng

Singapore’s population is ageing and by 2030, one in four Singaporeans will be 65 and above. The proportion of adults aged 60 and above with three or more chronic diseases nearly doubled from 19.8% in 2009 to 37% in 2017. Hence, the number of individuals in Singapore requiring supportive and palliative care is expected to increase. However, the term palliative care is shrouded in myths and misconceptions. Many associate palliative care with dying and believe that nothing more will be done to treat them, but it is so much more than that.     

In Good Health speaks to Assistant Professor Grace Yang, Senior Consultant, Division of Supportive & Palliative Care, National Cancer Centre Singapore (NCCS) to debunk these misconceptions and explain why supportive care is essential from day one of the cancer journey.

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 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.