01 | Our Leader
Rebecca Yuen
About Rebecca
Rebecca takes on the role of a mother and a caregiver. But more importantly, she perseveres as a fighter and a leader for her 21 year old daughter Yao yao, who is diagnosed with Tuberous Sclerosis Complex (TSC) since she was 5 months old. She recalls the 9 month diagnosis process as her darkest journey, as she had to deal with the unknown. Seeing her daughter’s first MRI scan within those 9 months, where her brain tumours mimicked “seeds in a watermelon” continues to haunt her till this day.
Holding up a perfectly imperfect family
Rebecca once dreamt of a simple life, living as a housewife and a mother with two perfect daughters. But her “perfect” life shattered when she realised the unchanging fate of her daughter’s rare condition. Yet, she still found the “perfectness” within her imperfect family. She learned to appreciate small improvements and realised the importance of quality of life and health instead of desperately climbing the social ladder. She said, “Yao yao gave us strength and she continues to unite our family till this day.”.
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Just another file
As Rebecca’s daughter’s conditions worsen, with multiple seizures occurring daily, she felt like her daughter’s time was almost up. However, her persistent inquiry for her daughter’s condition was once met with a cold response- “Your daughter is just another file stacked up in my office”. This emphasises the harsh reality of our healthcare system. It may be easily forgotten amidst the long and busy hours, but patients are more than just a diagnosis written on paper. They are “files” with feelings and most importantly, they need empathy from us. Despite these dehumanising responses, Rebecca never gave up. She said, “I realised my tears will never wash away my haunting reality. And these doctors were still my only hope. So I had to face it, I just had to keep trying”. That mentality was what got her through.
About Tuberous Sclerosis Complex (TSC)
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Cause
Mutation in TSC1 or TSC2 gene
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Inheritance
Autosomal dominant genetic disease; in some patients it is caused by genetic mutations
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Prevalence
Affects about 300 people in Hong Kong
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Symptoms
Seizures, tumours on vital organs, cognitive and behavioral disabilities. Severity varies with location and size of tumour
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Effects on patients
Affects functions of vital organs as well as cognitive and mental health
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Treatment
Antiepileptic drugs to control seizures, medication needed for tumours and behavioural problems as well
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“I wish rare diseases would become a common term. Just like the flu.”
The turning point
Although Yao yao’s surgery overseas was successful, she still had a long way to go. The lack of medication for TSC patients in Hong Kong continued to cause Yao yao and many others to suffer. Taking the doctor’s advice, towards the end of 2014, Rebecca started the TSC association of HK. She recalls ,“I was very naive at first. I thought the government would hand me the medication right after I started the association.”. The complex process involved Rebecca to scramble for the media’s attention, as many patients will not be able to wait forever. When Rebecca was at her lowest point, she remembers how Dr. Ko Wing Man gave her immense hope as he promised her in one of her exhibitions- “I will definitely help you achieve what you’re fighting for before I resign”. This is the empathy and care we need, especially from healthcare authorities, to show our society that the voices of rare disease patients need to be heard.
TSCAHK has made inspiring progress, but the process was definitely not easy. They spent four years seeking for government subsidies as the drugs available were outrageously expensive and unaffordable for many families. Unfortunately, their battles were only recognised when one of their TSC patients, Chi-Yin-Lan, passed away a week after a legislative council meeting, where she begged the government for funding. Although there were some subsidies available, they usually benefited only a few TSC patients, with tumour sizes larger than 3cm or extremely rare cases of patients suffering astrocytoma. The majority was left neglected and suffering, including Rebecca’s daughter Yao yao. However, their efforts finally paid off as new drugs targeting patients with spasms will finally be subsidised in the coming April, and is expected to benefit 90% of TSC patients. Rebecca encourages other patient groups to never give up, follow their footsteps, and together advocate for rare disease patients.
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Words for Hong Kong
Rebecca understands the difficulties for the government and the health authority to put all their efforts into supporting rare disease patients. However, she believes that the right to survival is equal for everyone and uncommon diseases are still worth saving. Rebecca emphasises the only method to facing rare diseases as a society- “We need to educate the public, doctors and authorities. But most importantly, we need people who are open-minded and are willing to empathize with us.”
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“I am always willing to try. Because not trying will get you nothing.”