Hong Kong Stories

Life with a Rare Disease (35x6)

Data di messa in onda: Ott 25, 2018

“Seek medical treatment whenever illnesses strike” is a golden principle known by all, yet, there are still patients in Hong Kong afflicted by diseases which are difficult to diagnose. In return for spending large time diagnosing such diseases, they only discover that such diseases are out of the depth of doctors and get a conclusion of “It is untreatable at the current state.” These patients are suffering from “Rare Diseases”. According to the criteria set out by the World Health Organisation, there are only six to ten cases of rare diseases in every ten thousand people. America, EU, Japan and even Taiwan all define domestic rare diseases in line with similar criteria. However, rare diseases have never been defined in Hong Kong, hence the lack of corresponding health care arrangements, such as pharmaceutical research and development, funding support, and comprehensive treatments. Therefore, patients with rare diseases in Hong Kong can only explore and seek treatment options suitable for them in the ordinary health care system. The parents of TAM Wing-hang (Hang) noticed Hang’s health conditions were different from those of other children when he was six-month-old. Thus, they spent months to find out from a doctor that their son was suffering from a rare disease – “Spinal muscular atrophy (SMA)”. The muscles on Hang’s hands and legs have been weak since his childhood, limiting his mobility, for which he can only live in wheelchairs. He needs to rely on his family for everything, and even needs assistance from his maid for daily activities. However, he still leads a positive life. Not only did he endeavour to enter the university, but he also does respiratory exercises every day to stay healthy in the hope of the appearance of new medicine. Now, Hang is studying in his fourth year of Theology at the Chinese University of Hong Kong. Since his freshman year, Hang has been learning to live independently. He insisted on leaving his parents and living in the host