Myasthenia Gravis Patients Face Delayed Diagnosis, Loss of Livelihood in Hong Kong
On.cc · 1 SOURCESabout 1 hour ago2 MIN
Summary
Hong Kong patients living with myasthenia gravis are experiencing devastating impacts on their careers and daily lives, with more than half developing symptoms before turning 40, according to a new study by the Hong Kong Myasthenia Gravis Association. The chairman of the association, Cheung Siu-chung, who has lived with the disease for 17 years, and fellow patient Michelle shared their difficult journeys at a press conference today (17th), highlighting diagnostic delays of up to one and a half years and the progressive loss of bodily functions. Both patients are urging the government to introduce new medications to help them regain independence and return to the workforce.
Key Points
- Cheung Siu-chung, who was an outdoor activity instructor before falling ill in his 30s, took 18 months to receive a proper diagnosis, during which he became so weak he could barely walk home .
- Michelle was initially misdiagnosed when her drooping eyelids were attributed to contact lens-related corneal damage, delaying her proper diagnosis by several months .
- At the peak of her illness, Michelle could not perform basic tasks like brushing teeth or eating with a spoon, and food would regurgitate into her nasal cavity .
- Due to her physical appearance changes, Michelle was once questioned by customs officers who assumed she had undergone a failed plastic surgery procedure, causing her to break down in tears .
- Traditional treatments including corticosteroids and immunosuppressants are becoming increasingly ineffective for both patients, with Michelle already showing early signs of osteoporosis .
Why It Matters
The association highlights that current treatment options have significant limitations, leaving many patients trapped in a cycle of recurring symptoms and medical appointments that burden the healthcare system. With patients losing their ability to work during their most productive years, the social and economic costs extend beyond individual suffering to affect families and the broader community. Introducing new medications could potentially restore patients' independence and enable them to contribute meaningfully to society again.
The association highlights that current treatment options have significant limitations, leaving many patients trapped in a cycle of recurring symptoms and medical appointments that burden the healthcare system. With patients losing their ability to work during their most productive years, the social and economic costs extend beyond individual suffering to affect families and the broader community. Introducing new medications could potentially restore patients' independence and enable them to contribute meaningfully to society again.