Conference calls for better care for neuromuscular disease patients

The 5th Myasthenia Gravis Conference was held online during the weekend, ahead of the 9th Myasthenia Gravis Care Day, which falls on Wednesday.

Organized by Aili Myasthenia Gravis Care Center, the conference aimed to bring together patients, doctors, scholars, charitable organizations and others to attract more attention to myasthenia gravis and people who have it, as well as improve their situations.

Myasthenia gravis (MG) is a long-term neuromuscular disease, which can result in double vision, drooping eyelids, trouble talking, trouble walking and even endanger one's life. However, patients can return to normal life after timely and sufficient treatment.

The 2022 health report of Chinese MG patients was released during the conference. Statistics from the report show the quality of life for patients has improved when compared with 2018, but their situations are still far from being good.

Dong Dong, an associate researcher at Shenzhen Research Institute of The Chinese University of Hong Kong analyzed the report. According to her, patients are still burdened by the medical expenses. Thirty percent of adult patients cannot get employed or shoulder family responsibilities. Seventy-six percent of them live in depression or anxiety.

Neurologist Xu Xianhao gave a keynote speech during the conference, in which he introduced the research and development of medicines that has potential to be helpful for MG patients. He predicted there would be more medicine and better therapies for them in the future, and encouraged them to live with hope.