09 | Our Fighter
Bithiah Nip
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.
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.
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.
About Myasthenia Gravis
Cause
Autoimmune disorder; abnormal antibodies attack receptors on muscles, causing weakness
Inheritance
Non-inheritable
Occurrence rate
Around 1000-2000 patients in Hong Kong
Symptoms
Drooping of the eyelids, chewing and swallowing problems; weakness of muscles in the limbs
Effects
Patients cannot perform daily actions and tasks
Treatment
Managed with various medications; removal of the thymus gland helps alleviate symptoms
“I learnt more from patient organizations than from doctors.”
Bithiah’s only wish
As years passed, Bithiah began to accept the idea of death and was prepared for it. However she especially hopes for the government to put more efforts into serving this neglected group, as all rare disease patients deserve adequate, professional medical treatment and attention. She believes the importance of setting up specialized departments for rare diseases to ensure quality medical service from medical workers that understands the hardships and needs of different rare disease conditions. Although Bithiah is forced to travel with a wheelchair, she still volunteers in physiotherapy centers and focuses on developing her interests in crafts. Bithiah only has one wish: “to live a good day, everyday”.
“I only have one wish now: to live a good day, everyday.”