An unintentional diagnosis 

Bithiah’s conditions worsened when she experienced double vision and fatigue at work. She tried to ignore such symptoms and persevere through her work at a Christian organization. She realized the severity of her condition when she struggled to open her eyes and converse properly, especially during her working hours. Her daily activities were hindered as she recalls a time where she attempted to chase after the bus, but failed and sprained her ankle. Although she tried to settle down and rest, the symptoms of fatigue never left. That was the turning point for Bithiah , as she finally sought for a diagnosis after such incidents and reluctantly quit her beloved job. 

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The problematic healthcare system 

For Bithiah , the Hong Kong healthcare system has failed to give her appropriate treatment. She realized how both the government and doctors have insufficient knowledge regarding rare diseases. She was particularly troubled during the start of her diagnosis as she could not obtain any information about the disease and medications from her doctors. She said frankly, "I know more from patient organizations than from doctors." During the two years of her diagnosis, she was admitted to the hospital for nearly ten times. When she needed more medication, the process took another six months and only a small dosage was approved. Bithiah emphasizes her disappointment and how there is a lack of research, data and experience with rare disease patients in HK. 

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Bithiah also expressed her frustration with HK public hospital’s testing program as it was not comprehensive enough, which caused wrong prescriptions of medication that worsened her condition. Since there isn’t a specific rare disease department in HK’s healthcare system, Bithiah had to trial and error with multiple specialities to treat different complications that arises from her one disease- Myasthenia Gravis. This inefficiency exhausted Bithiah and she was admitted to the hospital multiple times after her different appointments in different specialties. Bithiah felt completely alone, stressed and suffocated which deteriorated her mental health and caused Bithiah to develop suicidal thoughts.