May 30th every year is “World MS Day”, in order to let more people Learn about multiple sclerosis, initiated by the Beijing Illness Challenge Foundation (ICF) and supported by Bojian Public Welfare, “China’s First Demyelinating Disease Doctor-Patient Public Welfare Talk Show” was recently successfully held in the cloud.
Affected by the epidemic, the event was held online, but this did not affect the enthusiasm of the two doctors and five multiple sclerosis (MS) patients in front of the “stage” to perform. The passionate speeches of every guest performer and the stories of “Laughing at Life” all showed the benevolence of doctors and the courage and faith of MS patients to see life with a smile, and also deeply empathized with online audiences. This unique talk show aims to raise the public’s awareness of multiple sclerosis, a rare disease, while encouraging patients to actively regulate treatment, live an optimistic life, and call on the whole society to give more care and understanding to MS patients.
Professor Xu Yan, chief physician of the Department of Neurology, Peking Union Medical College Hospital, as one of the performers, showed the tenderness of the angel in white after removing the white armor. His words interpret the stories of the disease and patients over the years, and thank this unique talk show for connecting neuroimmunologists and demyelinating patients, creating a stage for self-expression, passing care, and In this unique and splendid way, the public’s awareness of rare diseases has been raised. Rare is not alone, and I hope that more and more demyelinated patients will never give up, actively and standardized treatment, and return to a better life.
Multiple sclerosis is an immune-mediated disease characterized by inflammatory demyelinating lesions of the central nervous system. In China, the incidence of MS is 0.235/100,000/year, and a total of 30,000 to 50,000 patients are estimated to be a rare disease. MS is more common in young adults and is more common in women. As the disease progresses, repeated episodes of symptoms can affect motor, vision, cognition and other functions, leading to disability. Among them, walking dysfunction is the earliest symptom of MS. Up to 85% of MS patients regard walking impairment as their initial symptom, and 93% of patients will have walking impairment within 10 years of the disease. Without timely and effective treatment, MS patients may experience irreversible neurodegenerative disease after multiple relapses and remissions, eventually leading to severe disability such as paralysis and blindness.
On a talk show event, an MS patient jokingly called himself a “one-in-10,000 wrestling queen” who often falls easily because of his walking dysfunction. The progression of MS’s disease made her life “stumble”. She was trapped in a small space in the Mood for Love, which not only limited her life, but also brought a great psychological burden. In the past, there has been a lack of drugs that can specifically improve the walking function of these MS patients, and can only be treated by managing various factors related to walking disorders. With advances in medical science and technology, patients now have access to more targeted medicines and treatments.
Another doctor guest in this talk show, Professor Yang Chunsheng, chief physician of the Department of Neurology, Tianjin Medical University General Hospital, said that he helped demyelinating patients get standardized treatment and return to A normal life is the responsibility and expectation of doctors. Today, doctors have more and more “toolboxes”, which will help more demyelinated patients to relieve their heavy psychological burden and mental pressure, maintain an optimistic attitude, and work with Doctors work together to defeat disease.
In addition, the “Demyelinating Patient Home” patient care platform was launched, rooted in the “Demyelinating Fragmented Thoughts” WeChat public account, and built a systematic, The customized one-stop service platform provides patients with convenient and considerate services including disease popularization, self-examination map of drug availability, medical insurance policy interpretation, and patient communication with the community, bringing customized customization at their fingertips. Caring and helping patients solve their problems as quickly and efficiently as possible. The “Home for Demyelinating Patients” will become a platform for interaction between patients and between patients and doctors.
（Pan Jiayi）