NCD Chronicles #22: The Lonely Journey of Living With Spina Bifida

What is it like living with a chronic condition from birth and to have a lifetime of managing health complications that would never go away? That’s the reality for people born with spina bifida, one of the most congenital birth defects in the world. In this episode of NCD Chronicles, we hear from Su Xiao Vin, a person with spina bifida, on the challenges of living with less visible disabilities and how it affected her both at school and, later, at work. We also hear from Prof Dr Amaramalar Selvi Naicker, consultant rehabilitation physician and co-founder of Spina Bifida & Hydrocephalus Association Malaysia (SIBIAM).

NCD Chronicles is a series about people living with NCDs, going beyond the diagnosis to explore their personal experiences, their challenges, as well as the impact of their health condition on their loved ones. These stories reveal the importance of understanding the unique struggles and needs of the individuals behind the disease, in our response to the NCD epidemic. 

—

SIBIAM is organising the 30th International Conference on Spina Bifida and Hydrocephalus from 24th to 26th October in Kuala Lumpur, the first time this international event is hosted in Southeast Asia. To find out more and support the work of the conference and SIBIAM, go to www.sibiam.my.

Image Credit: Su Xiao Vin