A painting of the rare disease “narcolepsy”.
Red Net Moment reporter Liu Xuan reported from Changsha
On the afternoon of February 27, a small art exhibition quietly appeared on the street at the most popular Sikoukou in the Wuyi business district in downtown Changsha, attracting many passers-by to stop and watch. Curiously, these paintings are not exquisite, and the content of the pictures is very abstract, but many citizens still took out their mobile phones to take pictures with them. The reporter learned that these paintings are from the rare disease “narcolepsy”patienthand.
The last day of February every year is International Rare Disease Day. On the occasion of the International Rare Disease Day in 2022, this small exhibition allows the public to understand rare diseases more intuitively and see the rare patient group.
“Dream Bus” attracts attention “narcolepsy”patient’s dream
Rare diseases are those diseases with very low incidence. Rare diseases are also known as “orphan diseases”. In 2018, the National Health Commission and five ministries and commissions jointly issued the “First Batch of Rare Disease Catalogues”. This is the first time the government has defined what rare diseases are in the form of a catalogue. Different countries and regions in the world have certain differences in the identification standards for rare diseases according to their own specific conditions. For example, the United States defines a rare disease as a disease with fewer than 200,000 people (or a population ratio of less than 1/1500) every year; Japan defines a rare disease as a disease with fewer than 50,000 people (or a population ratio of 1 in 1500). /2500), and Taiwan, China, takes the incidence of less than 1 in 10,000 as the standard for rare diseases. In February 2019, the National Health and Medical Commission announced the establishment of a national rare disease diagnosis and treatment collaboration network to strengthen the management of rare diseases in China and improve the level of rare disease diagnosis and treatment.
In the art exhibition, a painting called “Dream Bus” attracted the attention of many people. In the picture, a bus hovered along the turquoise sea of clouds and flew freely in the sky. 25 year old“narcolepsy”Patient Siga told reporters that the background of creating this painting was that one day she dreamed in a dream that she and her friends would ride a bus together. , floated to the clouds, turned into an air bus, and the dream became the source of the creation of this painting.“narcolepsy”The patients released the plots of their dreams in the form of art, used small paintings to let everyone into their inner world, and used the patients’ self-help to appeal to the public’s attention and help more people understand sleep problems.
The reporter learned that“narcolepsy”It is a serious chronic rare neurological disease with high incidence in childhood. The main clinical manifestations are excessive daytime sleepiness, cataplexy episodes and nocturnal sleep disturbances (including nocturnal sleep disruption, increased number and duration of awakenings, sleep paralysis, hypnagogic hallucinations, nightmares, parasomnias, and REM sleep behavior disorder, etc.).“narcolepsy”It has been identified as a rare disease in many parts of the world, with a prevalence rate of 0.0129% in Taiwan, China. After years of public education in China, there are currently only 1,600 patients whose names have been clearly registered in the patient organization “Kuezhujia”, and less than 6,000 cases have been registered in several major sleep centers.
Popular science rare disease knowledge sends warm blessings
In addition to this small exhibition, the rare disease cartoon character “Han Xiong” came to the door of Simen, sending the warmest hugs to passers-by. Volunteers from different industries in the society also took to the streets one after another to popularize the knowledge of rare diseases for everyone. , send warm wishes.
“I think this exhibition is very meaningful.” Ms. Li, who was shopping at Simenkou, believes that everyone has the ability to love. In the future, she will learn more about rare diseases, let more people pay attention to rare diseases, and give them the power of love. Many passersby said that through this exhibition, the hug of Hanxiong and the popularization of volunteers, they have further deepened their understanding of rare diseases, and will pay more attention to such news in the future.
On February 27th, at the entrance of Changsha Division, passersby stopped to watch a small art exhibition of patients with rare diseases.
This public welfare activity was jointly organized by Hunan Golden Eagle 955 Radio Station, Changsha Municipal Direct Working Committee, Hunan Medical Public Welfare, Illness Challenge Foundation, Broadcasting and Hosting Society and Ziang Health. Since 2018, the volunteers from Golden Eagle 955 Radio Station have been paying attention to rare diseases, and they have been speaking for this group in various ways for five consecutive years.
During this year’s International Rare Disease Day, a large number of well-known hosts such as He Jiong, Wei Zhehao, Qiu Xiao, and He Shuai also participated in the recording of poetry. These recitation recordings have been uploaded to the Internet simultaneously, calling on all sectors of society to pay more attention to the rare patient group. Enter the world of rare patients and support them to face rare diseases bravely.
Source: Red Net
Author: Liu Xuan
Editor: Xiao Tuo Return to Sohu, see more
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