Sleep when you say it during the day, and nightmares are endless at night. When you are in a state of excitement, you suddenly collapse when you wake up. When you wake up, you feel like you are in a dream... "These seemingly weird behaviors are likely to be a sleep disease, which we call narcolepsy." said Associate Professor Yu Huan, Department of Neurology, , Affiliated to Fudan University.
Today (September 22) is World Narcolepsy Day. A "Rare Dream" charity exhibition jointly organized by Huashan Hospital , Shanghai Charity Foundation-Blue Whale Rare Disease Special Fund and Narcolepsy Patients Juezhujia, Zi'ang Health, etc., opened in the outpatient clinic hall of the Hongqiao Campus of Huashan Hospital Affiliated to Fudan University. The exhibition included more than 30 paintings, all of which were submitted by patients and volunteers to become painters and created together. Each painting is full of common wishes from doctors, patients, volunteers and society, and also allows the outside world to "see" this type of rare disease for the first time.
The young man "slept whenever he said he could sleep". He went to seek medical treatment for ten years and finally confirmed the diagnosis.
This "embarrassment" of sleeping while saying that it is serious affecting Xiao Liu's work and life. Over the past ten years, he has been seeking medical treatment dozens of times, but has never improved. Until the end of last year, Xiao Liu saw Associate Professor Yu Huan's popular science on TV and felt that his symptoms were very similar to his own, so he began to pay attention and make an appointment with Dr. Yu Huan's outpatient clinic.
In March this year, Xiao Liu came to Shanghai from Lhasa. Dr. Yu Huan's outpatient clinic. He described his symptoms in detail and was initially diagnosed as "narceloss". In August this year, after further series of tests such as overnight polysomnography monitoring and multiple sleep latency tests, Xiao Liu was diagnosed with "narcelona".
"Finally found it!" At the moment of diagnosis, Xiao Liu felt relieved, "I have been tortured by it for ten years, traveled to seven or eight cities, had many tests, and had been diagnosed with neurasthenia, anxiety, etc., and therefore took various medicines, which often had no effect, but became more and more serious."
Yu Huan said that narcolepsy is a neurological disease and is a rare disease recognized worldwide. "This disease often occurs in adolescents and young people, causing learning difficulties, reduced work ability, etc., and even affects personal future. However, due to the lack of sufficient understanding, patients are easily misunderstood, and people around them often do not pay enough attention, including some doctors. Therefore, there are many patients like Xiao Liu who have been finally diagnosed for several years or even decades."
It is reported that there are currently less than 6,000 narcolepsy cases registered in major sleep centers across the country, but the actual number of patients may be hundreds or thousands of times greater than this number.
"Fortunately, there is a treatment plan for this disease, and patients can control their condition as long as they receive regular treatment. Through this exhibition, we also hope that more people will recognize this disease, have less misunderstanding and blame, have more care and understanding, and allow patients with narcolepsy to receive timely and good treatment." Yu Huan said.
Sleep disease diagnosis and treatment is a long way to go. The doctor-patient society works together to
my country's epidemiological survey shows that the prevalence of sleep disorder in the general population is as high as 35%, but the overall level of correct identification, correct diagnosis and systematic and standardized treatment of these diseases broadly called "sleep disorder" is relatively low, and the proportion of patients who have truly received standardized and effective treatment is seriously insufficient.
is one of the earliest and most influential sleep disorder research centers in China. Relying on the top domestic neurology department, the Sleep Disorder Research Center of Fudan University and Huashan Hospital Sleep Medicine Center have been committed to the research and diagnosis of sleep disorders for a long time. They have received more than 5,000 people every year and provide patients with multiple sleep monitoring and disease diagnosis, and one-stop comprehensive diagnosis and treatment of multidisciplinary diseases.
Take narcolepsy as an example. The main symptoms of the patient include daytime sleepiness, catastrophic fallout, sleep/wake-up hallucinations and other sleep symptoms, showing symptoms similar to " sleepwalking " or "dream syndrome", among which nightmare, paralysis and hallucinations often occur.
Unlike ordinary people who dream, narcolepsy patients can clearly remember and describe their dreams. Dai Ying, director of the Blue Whale Rare Disease Special Fund of Shanghai Charity Foundation, said that many people say that this type of patient is "born artist" after watching the art exhibition. In fact, the dreams of patients with narcolepsy are mostly terrifying. Although these works look colorful, you will find that there is a hidden crisis in everyone's dreams, like Xiao Liu's dream "Landscape". At first, you will see swimmers swimming in the mountains and rivers, accompanied by beautiful big fish next to them, which seems very comfortable. However, if you look closely at the painting, you will find that there are sharp sharp corners on the back of the big fish, the fish breaks its ventral fins and flows with tears, and there are flames on the back of the mountain. These are all dangers that exist in the patient's subconscious.
In addition to narcolepsy of central origin, sleep-related movement disorders such as acute and chronic insomnia, sleep-induced breathing disorder, sleep-induced motion disorder, sleep-walking disorder, , etc., all sleep-related movement disorders, such as sleep-resistant leg syndrome, are all sleep-related movement disorders.
"But it is more worth noting that sleep disorders are sometimes just an upstream disease. The early manifestations of many diseases are hidden in sleep, such as sleep apnea. If not treated, heart disease, diabetes , hypertension may occur in a few years. For example, if the cystic syndrome is not treated formally, it may develop into Parkinson's disease , cognitive impairment over time. Early screening, timely detection, and timely treatment of sleep disorders can delay the subsequent course of the disease. As doctors, patients and society work together, I believe this path will be smoother and smoother." Yu Huan said.
In addition to the outpatient hall of the Hongqiao Campus of Huashan Hospital, there are also art exhibitions in the ward of the Sleep Medicine Center of Fudan University. It is reported that this "rare" hospital art exhibition will be held in Huashan Hospital until the end of the year.
"We hope that through the holding of this art exhibition, more people will pay attention to this group of patients with rare diseases, and we also hope that the hospital will become a window to convey health knowledge and humanistic concepts to the society through artistic methods." Professor Zhao Chongbo, executive director of the Rare Disease Center of Huashan Hospital and vice president of Hongqiao Campus, said.
In the future, Huashan Hospital will open more people-friendly display windows, plan and display more interesting and informative doctor-patient works and popular science content, and convey the concept of a healthy life to more people.
Author: Tang Wenjia
Editor: Tang Wenjia
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-