12 | Our Future
Tsz Ki
A bolt from the blue
Before Tsz Ki was diagnosed, he always had exceptional grades. With his excellent DSE results, he chose to study the Department of Biochemistry at the University of Hong Kong. Unfortunately, when he was 20 years old, he suddenly suffered from depression and anxiety. He was deeply troubled by panic attacks and hand tremors. Tsz Ki never saw improvement even after consulting psychiatrists for a long time. After seeking medical treatment and consultation for three years, Tsz Ki was finally diagnosed with Wilson's disease.
Tsz Ki felt like his whole world collapsed. "I can read research papers and know that this is an incurable genetic disease. Looking at the words "fatal", “irreversible", and "permanent injury", I felt completely desperate.” Tsz Ki tried to take medication to control the excess buildup of copper in his body, but instead, his conditions worsened. He recalls his insufferable hand tremors, uncontrollable drooling which severely affected his ability to perform basic tasks, such as, tying his own shoelaces.
Establishing a Patient Organization
Looking back at his early stage of diagnosis, Tsz Ki recalled that he felt very helpless, mainly because of the lack of psychological support. "I was mentally tortured at that time. I couldn't face myself, my family and friends." After personally overcoming the helplessness, hesitation and despair, he founded the "Hong Kong Wilson's Disease Association” with the help of his academic background in biochemistry. Tsz Ki wishes to provide emotional support to all patients by sharing his own experiences, “I hope I can encourage other patients and bring out their confidence, ensuring that they will get better, just like I did.”
About Wilson's Disease
Cause
Mutation on chromosome 13 resulting in accumulation of copper in different organs
Hereditary
Autosomal recessive disorder
Occurrence
About 211 patients in Hong Kong
Symptoms
Chronic hepatitis, cirrhosis or even liver failure; neurological and psychiatric problems
Effects
Affects daily lives of patients, through slow movement, learning and speaking abilities
Treatment
Copper chelating drugs taken lifelong, and dietary control of copper intake
“What patients need most is not informative information, but emotional support.”
Doctors
Tsz Ki recalls the countless appointments with different doctors and he believes that the difference between doctors lies in their “attitude". He noticed how a common problem among doctors is that many of them have already been practicing medicine for a long time which causes incidents where they have been very narrow minded and limited to their own specialties. He emphasizes the need for doctors to be sensitive and curious, however, their current practices makes it difficult to diagnose rare diseases with complex symptoms in disguise. “I hope that doctors will remember their original intentions and practice medicine with the mentality of treating people instead of treating patients.”.
Government Policies
In terms of policies, Tsz Ki hopes that the government will quickly define rare diseases so that resources can be properly allocated. In dealing with the development of rare diseases, Hong Kong falls behind Taiwan and the United States. The lack of definitions of rare diseases makes it difficult to approve laws and policies to protect patients with rare diseases. Tsz Ki believes that there should not be a price tag on human life as everyone deserves a chance to survive. The government should not solely focus on profits and the monetary value of medications, but the emotional lives and families of rare disease patients.
Joy
When asked which object best represented himself, Tsz Ki thought for a while, smiled and said, "I think it is “Joy from Inside Out”, because she is positive enough to face everything happily." Tsz Ki recalls being negative and uptight as he always had high expectations for himself. Now he believes that his disease actually changed his life for the better. “I am already very fortunate. At least I finished my Ph.D. and ran a full marathon. I am also married and I can still go to work." Lastly, Tsz Ki wants to send this heartfelt message to all rare disease patients: “We cannot choose this disease, but we can choose the attitude we use to face it.”
"In this world, no one should lose their right to live just because they lack money. When we subsidize rare disease patients, what matters is not the price behind, but rather, the precious lives and the families behind them."