Abstract
When I started to major in Communication department, I told myself I have to speak for weak social group.
I remember I answered the question to chief nurse of LinKou ChangGung Memorial Hospital after been standing in front of their clinic for 2 hours with my friend:「How could people call the media is “mass communication” when it has no function for helping people, only making money and entertain audiences？」It sounds like I had great goal but unreal by that time, until 6 years ago, I saw the news：Lots of parents think the child who has “Tourette syndrome”is freak and not allowed their children close to people who has Tourette syndrome , I decide to be video volunteer of Taiwan Rare Disease Foundation.
In 3 years, I made a short film for Tourette syndrome and a documentary for “Tuberous Sclerosis Complex”, and donated my film's copyright to both foundations.
Each film maker wants to be unique, therefore spend most of time to looking for new topic. For me, I see feature of irreplaceable on Rare Disease patients, nobody can steal and remix their stories. Life is the chapter of most beautiful and most unpredictable, depends how you feel it and create the page belongs to you.
Fabry Disease is an Illness cause by Lysosome. Lysosome functions as the recycle center in our body, body garbage is delivered to the recycle center for metabolizing and decomposing, and transform it into vital compounds to continue functioning inside the body.
Fabry Disease is cause by loss of a-Gal through liposome. When Enzyme having a problem, the metabolism could lose function. GL-3 is going to accumulate in Liposome. Liposome will be damaged if there is too much GL-3,in the worse case scenario, the cells can't function properly and then will be dammaged and dead. The patient feel painful when the climate chages, because the neuropathy has been damaged, even feels painful when an emotions goes up or down, mostly the patient feels painful on peripheral, sometimes over the whole body.
According to patients description, their pain happens like burning or stabbing. Fabry Disease started to feel neuralgia on limbs at 7 or 8 years old, Taiwan has the highest incidence rate of Fabry Disease, incidence rate of Fabry Disease 1600/per person,800/per woman, much higher rate than averaged 50,000/per person. Heart type is the most common in Taiwan, It could not be diagnosed until 40 old, the cardiac hypertrophy is caused by the hidden toxins, the toxins cause ventricular hypertrophy slowly, finally causes the ventricular hypertrophy and leads to the lethal results, we all need to take it serious.
Our gene is unreturned from parents, cant't choose either, I have to be strict to face life issue, before I started to making film. I asked myself：Can I explore a new path with more beautiful and hopeful for rare disease patients?
Life is hard and short, happiness is way important, if there is no hope, if there is no if, how miserable will be？I wish I can do my best and people can through my film to understand how much rare disease patients suffer, we only need to be patient and more understanding to them.
In summer 2013, I decided to go on my challenging journey, wish I will do a good job.