From Sandy Chan, HAE HK
HAE HK’s main focus in 2020 is to raise public awareness about HAE in Hong Kong, and January 2020 has proven to be a big month for HAE in Hong Kong.
In January 2020, Radio Television Hong Kong (RTHK), a popular Hong Kong TV and radio public broadcaster, released two episodes about HAE for the health television series “Doctor and You” and “Healthpedia”. In the first episode, Miss Wong and Eliza shared their patient stories about their sufferings for many years as a result of frequent and severe swelling attacks. Dr. Philip Li from the Queen Mary Hospital elaborated on the science about HAE and treatments. In the second episode, Davy and myself from HAE HK shared that Hong Kong was treading far behind other countries in terms of diagnosing, treating and funding HAE. In addition to the lack of education in public about HAE, which made diagnosing HAE far more difficult and slower, modern medicine available elsewhere in the world was not available in Hong Kong. Even if patients gained access to modern treatments, the exorbitant price tag attached to these treatments made them highly impractical for the ordinary citizen.
In terms of education, representatives from HAE HK participated in the “Human Library Series” organized by the Hong Kong Alliance of Rare Disease (HKARD) where medical students from the University of Hong Kong, patients and doctors shared their experiences and understanding about HAE. This series gave students a good insight into HAE and the difficulties HAE patients faced in Hong Kong.
In addition, HAE HK presented to students of the University of Hong Kong about HAE as an example of a genetic disease at the “World Changed by DNA” seminar.
Other efforts in January 2020 included interview publications of doctors and patients on HKU Med, HKET and HKARD as well as a storytelling session to a class of Primary 1 Students about young patients living with HAE.
In February and March 2020, amid the coronavirus outbreak, HAE HK uses its best efforts to source and distribute surgical masks and sanitizing products to HAE HK members.
Stay tuned for more news to come from Hong Kong. In the meantime, good health and stay safe!
