China News Service, Beijing, March 22 (Reporter Du Yan) Laughing will cause weakness and fall?
Can you fall asleep while walking, eating, or talking with people?
These symptoms may be suffering from narcolepsy.
On the 21st is World Sleep Day. At the "China Narcolepsy Multilateral Cooperation Symposium" held in Beijing, representatives from academies, hospitals, patient organizations, and enterprises discussed the rare diseases faced by Chinese patients with rare diseases such as narcolepsy. Difficulties and challenges, and discuss how to join forces to help patients with rare diseases.
The purpose of "World Sleep Day" is to arouse people's attention to the importance of sleep and sleep problems.
In China, a group of people suffering from "narcolepsy" suffer from recurrent uncontrollable sleep during the day, cataplexy, and night sleep disturbances, which have caused problems in education and employment, as well as interpersonal relations and mental health. damage.
According to Han Fang, director of the Respiratory and Sleep Center of Peking University People's Hospital, the current prevalence of narcolepsy in China is about 0.033%, and this group has more than 500,000 people.
In China, this disease usually occurs in children or youth.
Patients often suffer from uncontrolled short sleep anytime and anywhere, or suddenly collapse and collapse.
He pointed out that as of now, the State Drug Administration has not formally approved any drugs for the treatment of narcolepsy, and Chinese doctors have very limited options for treating narcolepsy.
However, he emphasized that patients must face up to and pay attention to narcolepsy, and seek professional evaluation and treatment as soon as possible. "I hope that more people can understand and face narcolepsy."
The patients call themselves "Juezhu", and 37-year-old Bao Mindong is one of them.
She was diagnosed with narcolepsy after graduating from university. The first symptoms were nightmares, and the symptoms of cataplexy gradually appeared over time.
"Fortunately for many patients, the most serious thing I have is cataplexy in the office." Speaking of the impact of the disease on life and work, Min Dong said that emotional stimuli such as laughter, anger, excitement, etc. may be induced Cataplexy, "Suddenly lose muscle tension in the head and lean back or bow forward. I was worried about whether my neck could bear it."
Therefore, she said that in daily life and work, we pay great attention to developing good habits, and try to avoid traveling alone or engaging in dangerous things, such as climbing, swimming, driving, and high-risk operations.
"We must make more people aware of this disease." Wang Yiou, chairman of the Beijing Pain Challenge Fund, believes that patient organizations' understanding of the patient community needs to be paid more attention to, so that professional teams can do what they should do.
As a company dedicated to building China’s first rare disease ecosystem and providing sustainable support for rare disease patients in the future, Xiang Yu, CEO of Langyu Group and head of Langhua Pharmaceutical, expressed the hope that through this World Sleep Day event, all walks of life will be aroused. The cognition of rare diseases such as narcolepsy will promote more local cooperation and innovation.
To fill this gap in China, Langhua Pharmaceutical, a subsidiary of the group, has reached a strategic cooperation and exclusive licensing agreement with French Bioprojet to obtain the exclusive development, registration, commercialization and production rights of Wakix®, a narcolepsy treatment drug in China.
However, to solve the problems of screening, diagnosis, treatment, and access to medications for rare diseases such as narcolepsy, one party alone is far from enough. Government departments at all levels, alliances, medical and health experts, and patient organizations are needed. , Enterprises and other joint efforts.
Li Linkang, executive director of the China Rare Disease Alliance, pointed out that the China Rare Disease Alliance not only cares for the survival of patients with 121 diseases in the current rare disease list, but also pays attention to the diagnosis, treatment, rehabilitation, and payment of many rare disease patients, and looks forward to rare diseases. Patients' illnesses and living conditions can be further improved, which requires continuous efforts from many parties, and ultimately the policy dividend will benefit the patients, so that they can regain their health with the hope of life.
On the same day, the China Rare Disease Alliance and Langyu Group formally signed a strategic cooperation agreement. The two parties will conduct in-depth research on the social burden of rare diseases, popularize multidisciplinary diagnosis and treatment, improve regional medical centers, train designated doctors, and explore the whole process of disease management and patient support. Three-dimensional, intensive disease comprehensive diagnosis and treatment model; relying on Ziang health data service platform to help patients with the entire process of disease management.
At the same time, the two parties will establish a more comprehensive, open, exploratory, and innovative cooperation level, which will also provide the most socially effective path and mode of exploration for the treatment of rare diseases in the future.
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