There are about 700,000 narcolepsy patients in our country. The onset is like a sudden "power failure", and they are also facing the difficulties of "not being understood", "no medicines available", and "no money to cure".
Our reporter Zhang Dianbiao
Since the age of 9, Yang Thu Thu always fell asleep suddenly regardless of occasion, or collapsed to the ground when he was excited.
In class, the northeastern girl often couldn't stop her tongue out.
The classmates gradually alienated her, "Don't play with her, she is contagious when sleeping."
In the Sleep Center of Peking University People's Hospital, her mother Liu Caixia was told that her daughter really had narcolepsy—narcolepsy.
According to Han Fang, secretary-general of the World Sleep Society and director of the Sleep Center of Peking University People’s Hospital, narcolepsy is a rare disease internationally. One part.
Up to now, there are about 700,000 narcolepsy patients in my country, and more than two-thirds have the onset of symptoms around the age of seven or eight.
"Noncolepsy cannot be cured by itself, and currently it cannot be cured with drugs." Han Fang said, "This means that many patients have been unable to attend classes, eat, take exams, drive carefully since they were young... They can even count money. sleep."
"Sleepy" such as "power failure"
"Sleepy" such as "power failure"
Every time she takes an exam, Liu Caixia always reminds her invigilator in advance that Yang Thu-tul should wake her up when she falls asleep.
Yang Thuul didn't want this either.
She pierced herself with a pen and a cone, but she couldn't "uniform" her sleepiness, leaving scars on her arms and thighs in vain.
"The head hanging beam and cone stabbing the thigh is very common in children." Han Fang said.
Bao Mindong, the head of the narcolepsy patient organization "Juezhujia", is also a narcolepsy patient. She likened this uncontrollable sleepiness to "forced power-off".
In her opinion, a person with this disease is like a storage battery with a smaller capacity than ordinary people, and "powers off" from time to time.
This kind of "power failure" is involuntary, and can enter a dream in a few minutes or even a few seconds, but it may take two or three hours for a normal person to do it.
A sudden "power failure" may last from a few minutes to several hours, ranging from several to dozens of times a day.
After a short period of "charge", the patient can stay awake, but not for too long.
Bao Mindong laughed at himself and said: "Just like the mobile phone advertisement says, charge for five minutes and talk for two hours."
In addition to sudden "power failure," patients also have symptoms such as cataplexy, sleep paralysis (commonly known as "ghost press"), hallucinations, and night sleep disturbances, which are called the "quintuple" of narcolepsy and sleepiness during the day.
"The nightmares of narcolepsy patients are particularly vivid, just like what happened in reality. They are still fresh after waking up, so that some patients can't distinguish between dreams and reality." For a while, Bao Mindong dreamed of being caught in a continuous dream. Hunting down, after waking up for a long time, you can still "smell" the bloody smell in your dreams.
Before going to bed, Bao Mindong could clearly hear the "non-existent" radio broadcast.
Among the small patients admitted by Han Fang, some people could "see" silhouettes and "hear" door knocks while sleeping.
"As for the'ghost press', adults are afraid, let alone children." Bao Mindong said, many patients have to be accompanied by their parents before they dare to fall asleep in adolescence.
These complex symptoms, which are difficult for outsiders to experience, cause "chargers" to be often misdiagnosed as epilepsy and psychosis.
Bao Mindong clearly remembered that a few years ago, a parent in Jiangsu anxiously told her on the phone that her daughter had these symptoms ten years ago, but the doctor at the time diagnosed it as schizophrenia.
After his daughter took anti-schizophrenia drugs for ten years, the parent's diagnosis in Beijing was that her daughter is no longer simply narcolepsy.
Han Fang said that misdiagnosis caused by insufficient understanding of narcolepsy is more common, and many patients have gone through a "detour" for several years before being diagnosed.
In addition to "sleepiness", Yang Tulium also faced the difficulties of "not being understood", "no medicines available" and "no money to cure".
Yang Thuul remembers that for a long time, no matter how he explained it, some teachers always said, "Her illness is just an excuse for not wanting to go to school. It is all parents used to."
Bao Mindong said that many people stubbornly think, isn't it just sleepiness?
Can't overcome to overcome, hold on again?
Even children who have been diagnosed often do not get the understanding of their family members and teachers, and they feel that the child is lazy, too squeamish, and unwilling.
"For children, not understanding and labeling are hurt. Some children fall into deep self-blame, become inferior and depressed." Bao Mindong said.
Liu Caixia found that when her daughter is sleeping in class, not all teachers can maintain patience and understanding; her classmates often nicknamed Thuul, “the child didn’t even have the courage to make friends in the end, and sweaty palms when seeing strangers. Stammering."
Liu Caixia recalled that Yang Thu Thu was smart and smart before she fell ill. Everyone wanted to hug him and buy something delicious.
She sighed and said that after her daughter became ill, her personality became irritable, and she told Liu Caixia not to worry about her.
But how can the mother leave it?
Cupping, acupuncture and moxibustion... Liu Caixia never let go of the hope that she could try, and she also encountered many doctors and crooks, and finally had to accept the reality that the disease could not be cured.
In order to save money, every time Liu Caixia went to Beijing to see a doctor, Liu Caixia bought Yang Thu Thu a sleeper ticket and took a hard seat by herself.
In the car, the mother and daughter soak a bowl of noodles, the daughter eats the noodles, and the mother drinks soup.
When they arrived in Beijing, the two also looked for the cheapest basement for the night.
Liu Caixia is a midwife in a county hospital with a monthly salary of 3,000 yuan. Her husband Guo Wei works odd jobs on the construction site and his income is unstable.
Yang Thuul eats "modafinil", which belongs to the national first-class controlled psychotropic drug.
"This medicine has been copied by pharmaceutical factories in China. It costs 300 yuan for a box and two tablets per box." Liu Caixia said, "but it's only a day's worth. It is expensive and may not be available. It is said that only 20 hospitals in the country can afford it. open."
Many patients choose to purchase from abroad, because this channel has been interrupted due to the epidemic.
There are also patients who take another wake-up stimulant called "Zida", a prescription drug for the treatment of ADHD.
A box of 15 pieces is 300 yuan, which can be used for one week.
Han Fang introduced that mainland China has not formally approved any drugs for the treatment of narcolepsy, and doctors have very limited drug options.
The drugs currently used by patients are all over-indication drugs, and there are considerable risks and economic pressures.
Liu Caixia established a WeChat group of more than 100 patients' parents. Most of them reported that there are few medicines available, difficult to use, and expensive to use. They hope that related drugs will be approved and included in medical insurance.
Huang Rufang, founder and director of the Corder Center for Rare Diseases (CORD), said that most rare disease drugs are expensive and require long-term treatment. In the absence of comprehensive medical insurance, treatment costs have become catastrophic medical expenditures for patients and families. It is common for patients to become poor due to illness and return to poverty due to illness.
Even more worrying is the intergenerational transmission of poverty caused by narcolepsy.
Han Fang said that for narcolepsy patients who have been onset since childhood, very few can be admitted to university.
It is also not possible to do courier, takeaway, etc. jobs that do not require high academic qualifications.
It is not uncommon for narcolepsy patients to fall asleep while cycling or driving.
Han Fang encountered a patient who was a hairdresser, and fell asleep after cutting it. As a result, it cut the ears of the guests, lost money and lost his job.
"It's very common for narcolepsy patients to change jobs. Some people even change jobs once a month." Han Fang said, "This also causes patients and their families to fall into a vicious circle of'morbidity-poverty-unavailability of medicine'."
"The'sleepy' beast is still fighting"
"The'sleepy' beast is still fighting"
Yang Thuul is already in the second year of high school.
Liu Caixia is most worried about her child now, what to do in the future?
"I don't dare to think about many things, I just hope that the child can use better and cheaper medicine."
In May 2018, the National Health Commission and the National Medical Products Administration jointly released the first list of rare diseases, including 121 rare diseases, and proposed that they will continue to be adjusted and expanded in the future.
Unfortunately, narcolepsy has not been included.
Bao Mindong feels that, like patients with other rare diseases, narcolepsy patients also hope that the society will pay more attention, and hope that "the sick have their medicine" and be included in the national medical insurance payment list.
However, many narcolepsy patients and their parents are unwilling to be "seen" and unwilling to be diagnosed.
They feel that since there is no cure at present, what is the difference if the diagnosis is not diagnosed?
Why do you label yourself as a rare disease patient?
In this situation, Bao Mindong always told them patiently that first of all, diagnosis can relieve the patient’s self-blame emotions, not that he is weak in will, but that he is indeed sick; secondly, only the diagnosis can be used to relieve symptoms. Prescription drugs can only talk about improving survival; again, without a diagnosis, how can doctors study this disease?
Talk about the hope of healing?
If the patients are "invisible", how can society pay attention to the disease and the patients?
"It is even more important to let the public and parents understand than to educate patients. Some parents are at a loss when their children are sick, and they further spread their anxiety to their children and aggravate the psychological pressure of the patients. Parents are the children's Dinghai Shenzhen. If the parents fail to collapse It seems that the child doesn't know how to deal with it." One of the reasons why the already lacking energy of Biao Mindong insisted on operating the "Juezhujia" is that he hopes that his family and school can provide a more comfortable environment for children to grow up.
In the eyes of many patients and parents, Bao Mindong is "active" and "energetic."
She has worked as a magazine reporter, a state-owned enterprise employee, an insurance consultant, and also runs a patient organization. She was not too sleepy to speak at patient exchange events for two hours.
Liu Caixia felt that it would be nice for Yang Tulium to be like her in the future.
What many people don't know is that in addition to narcolepsy, Bao Mindong also suffers from aggressive fibroids and depression.
She worked so hard to tell her parents to create a good growth environment for small "chargers", so that even if they live with "difficulties", they can perform a good show.
(In the text, Yang Tulium and Liu Caixia are pseudonyms)
(Participation: Liu Chengfeng)