BEIJING – Beijing has established the nation’s first support group for sufferers of amyotrophic lateral sclerosis (ALS), a rare disorder characterized by rapidly progressive muscle weakness and atrophy, to deliver information and help patients improve their quality of life.
A joint effort of the Chinese Medical Doctor Association (CMDA) and the Peking University Third Hospital, the group will host 10 patients each Thursday for a 2.5-hour meeting, according to Fan Dongsheng, who heads the hospital’s neurology department.
“The club will provide information, support and consolation for sufferers of the incurable disease, whose quality of life needs to be greatly improved,” he told China Daily at the launch of the association.
Applicants can call or visit the hospital to reserve a spot at the gathering, where they will get the latest updates on the treatment of ALS and hear advice from doctors in various departments that deal with the disease, such as neurology, internal medicine and respiratory medicine.
ALS affects nerve cells in the brain and spinal cord, causing muscle weakness or stiffness as early symptoms. Late-stage patients may become totally paralyzed, according to the World Health Organization.
Most patients are aged over 40 and respiratory failure caused by weak breathing muscles is the most common cause of death from ALS.
China has an estimated 200,000 ALS patients on the mainland, and roughly half of them will die in three to five years, said Yang Jing, secretary-general of the CMDA and co-founder of the group.
Compared with most Western countries, Chinese patients’ quality of life remains very low, Fan said, citing a huge gap in the use of respirators.
A respirator eases the symptoms of ALS, like breathing difficulty and sleeping trouble. But few Chinese patients get this help.
On the mainland, only 12 percent of patients use respirators. The proportion stands at about 70 percent in countries like the US and Japan, according to Fan.
He said there is relatively poor awareness of ALS and its treatment, even among doctors, although the disease was identified more than 100 years ago.