Govt urged to offer more support for ALS patients
The Hong Kong Neuro-Muscular Disease Association on Sunday appealed to the government to establish a dedicated specialist clinic and expand rehabilitation services for individuals suffering from Amyotrophic Lateral Sclerosis (ALS), a rare neurodegenerative disorder affecting approximately 200 people in Hong Kong. ALS, a progressive disease impacting the brain and spinal cord, causes muscle weakness, loss of coordination, difficulty speaking and swallowing, and can ultimately lead to respiratory failure.  The association has established the city's first-ever ALS registry to better understand the diverse needs of patients.  Data obtained from the registry has shed light on the challenges of diagnosing ALS promptly due to the elusive nature of early symptoms like muscle weakness.  The association said ALS patients in Hong Kong endured an average of four doctor visits and underwent five comprehensive examinations, including bone marrow tests and nerve biopsies, before receiving a diagnosis.  Twelve percent of patients experienced a diagnostic delay of over two years, it said.  The registry also reveals that more than 60 percent of patients are medically certified as severely disabled and over half experience difficulty with swallowing.  Dr. Kwok Tsz-kin, a consultant doctor and rehabilitation specialist with the association, highlighted the pressing need for specialised care and improved rehabilitation services provided by the government.  He said by alleviating symptoms and enhancing quality of life, patients will be able to maintain their dignity and spend valuable time with their families. "Before the patients have a diagnosis, they already start to have deterioration. That's why even before the patients have the diagnosis, we can start the rehabilitation so we can prevent complications that happen for the disease... as well as early intervention for those complications to make sure the quality of life of patients is maintained," he said.