August 26
Former Vice President of JD.com,
News from frostbite protester Cai Lei
Once again, it is on the hot search
Cai Lei said he was already preparing for his death
In a TV talk show, Cai Lei said sincerely that he could fully accept death. In fact, he was already preparing for his death last year, including finding a successor, setting up a charitable trust, setting up a body donation, writing a book, etc., "all of which are preparations that he is making when he knows that he is about to die."
Cai Lei also posted Weibo hot search screenshots in the circle of friends. He said: "Thank you all for your continued concern. At 10 a.m., we will discuss and cooperate with a team of Harvard University scientists, including two American academicians, to accelerate the clinical transformation of new neurodegenerative diseases such as frostbite in China. ”
Frostbite was diagnosed at the age of 41
The cure rate for this disease is 0
In the fall of 2019, 41-year-old Cai Lei was diagnosed with frostbite.
In June last year, Cai Lei said in an interview with CCTV that he first disabled his left hand, then his right hand, and now only half of his fingers can be lifted, and his legs have begun to lose strength. He can't dress, eat, drink, go to the bathroom, or even sleep at night with his own quilt.
"Since the end of 2021, it has been my wife who has helped me brush my teeth. Before when I could still brush my teeth, I felt that it was already difficult, and now I look back and envy. ”
Cai Lei took medicine with the help of his assistant
It is reported that the incidence of this rare disease is about 1.6 per 100,000, and today, with the rapid advancement of biomedical technology, the cure rate is still 0. The vast majority of patients will reach the end of life within 2-5 years.
So far, in nearly 200 years, not a single true case of ALS has been cured in more than 10 million patients worldwide.
He did everything he could
Look for possibilities to overcome frostbite
Before the age of 41, Cai Lei was undoubtedly a successful person: 95 outstanding alumni of Central University of Finance and Economics, "China's new economy leader", "China's reform contributor", "China's first electronic invoice", vice president of JD.com...
After the age of 41, he has a more widely known identity than before, but it is a cruel joke that fate has played on him: China's most famous frostbite sufferer.
Cai Lei data map
But Cai Lei is not willing to do this, he is used to challenges and playing with his life. Two months after being diagnosed with ALS, he decided to use himself as a weapon to fight ALS to the end.
For 4 years,
In order to overcome frostbite,
Cai Lei sells houses, sells stocks,
Even pulled up his wife who graduated from Peking University live broadcast to bring goods,
He built the largest in the world
scientific research platform for patients with frostbite,
Donate 10 million to launch a public welfare funding scheme.
Cai Lei and his wife
His implementation paths include: building databases, finding funding and scientist support, and promoting drug pipeline development; Supporting tens of thousands of patients with ALS: uniting more than 1,000 patients to donate brain tissue and spinal cord tissue for medical research; He also tried to live stream with his wife, and wrote an autobiography that became a bestseller.
"Even if you are defeated, you will never give in." Today, even if his health continues to deteriorate, Cai Lei's running still does not stop: he often works more than 16 hours a day, all year round; He tried to break the old rules of the game, connecting money, labs, pharmaceutical companies, patients and hospitals directly to shorten the time as much as possible.
Cai Lei data map
May 25 this year is Cai Lei's 45th birthday. On this day, he posted a circle of friends: "Cai Lei Icebreaker Station", which has been open for more than 8 months, has exceeded 500,000 fans on Douyin. Once again, he "started a successful business".
"I will fight until the last day,
Until the day I die."
Occasionally, Cai Lei also shows his vulnerable side.
Last month, he recorded a small incident in his circle of friends, his 4-year-old son didn't know where he heard that he was going to die, he couldn't help yelling at the child, and when he saw his son crying bitterly, his heart was cut like a knife. He knew that this was a burden that his son "should not have carried."
Previously, his mother was also depressed for a long time because he suffered from frostbite and quickly weakened. When will mankind conquer this disease of pain and despair, he thought?
In any case, he still aspires to work miracles, saying, "I will fight until the last day, until the day I die." ”
About ALS
This knowledge must be understood
The name of "ALS"
As with "leukemia"
It's frightening
Famous physicist Hawking,
Zhang Dingyu, winner of the Order of the People's Heroes
All suffer from the disease
What is ALS
Frostbite, also known as amyotrophic lateral sclerosis, motor neuron disease, is called ALS because the patient's limb muscles are progressively atrophied and weak, and finally unable to move, as if frozen by ice.
Patients are also known as "frozen people".
What are the clinical manifestations?
Professor Gao Cong of the Department of Neurology of the Second Affiliated Hospital of Guangzhou Medical University said that the name "frozen man" can more vividly describe the symptoms of patients: muscles gradually unable to move, as if frozen, gradually appear limb weakness, muscle tremor, and slowly progress to muscle atrophy and dysphagia, until respiratory failure.
Specifically, ALS is characterized by progressive muscle wasting with an insidious onset but persistent worsening of symptoms. Muscle atrophy often begins in one limb and gradually spreads to the opposite side and beyond, eventually involving the respiratory muscles, leading to respiratory failure.
Some patients begin with slurred speech and difficulty swallowing, called progressive bulbar palsy. There are also a small number of patients whose initial symptoms are dyspnea, which is easily misdiagnosed as a respiratory disease, resulting in delayed diagnosis and treatment. In addition to muscle atrophy, most patients are accompanied by muscle spasms, flesh jumps and weight loss, and in severe cases, weight loss can reach 30 pounds in half a year.
Why do I get frostbite?
At present, humans have not yet found an exact cause. 5%~10% of ALS patients have genetic changes or mutations, and one of the gene mutations SOD1 gene mutation may have a toxic effect on motor neurons and damage motor neurons.
Environmental factors may also play a role in the pathogenesis of ALS, and some scholars believe that the onset of some ALS patients may be related to certain metal elements, such as lead, mercury, aluminum, etc., and some evidence suggests that exposure to lead or other substances in the workplace or home may be related to ALS.
Some researchers believe that it is related to infection and autoimmunity, because people who are infected with bacteria and viruses or some immune deficiencies are more likely to get disease.
Is ALS inherited?
Most ALS is sporadic, only 5-10% of ALS will be inherited, and most gene mutations cause ALS at an early age of onset, even in adolescence.
Most patients have an age of onset between 55 and 65 years, and the younger the age of onset, the greater the possibility of inheritance. If the age of onset < 45 years, complete genetic testing is recommended.
Can ALS be cured?
At present, there is no clear cure for ALS, and the World Health Organization has identified ALS as one of the "five terminal diseases".
There is currently no cure for ALS, but it can improve symptoms, improve quality of life, and delay disease progression. "Many patients leave prematurely and starve to death." Professor Zhang Cheng, an ALS expert in the Department of Neurology at the First Affiliated Hospital of Sun Yat-sen University, said that dysphagia can cause long-term malnutrition, and choking may also occur that accidentally endangers life, or food reflux causes lung infections.
Taking some medications under the guidance of a doctor can help slow the progression of the disease; The most important thing is to maintain an optimistic attitude, which can help control the condition.
How to prevent frostbite?
Since there is no specific treatment, prevention is critical. Good work and rest habits, pay attention to exercise, and avoid contact with harmful substances are still good for prevention.
The doctor sent everyone 4 sentences: pay attention to rest and do not stay up late, meat and vegetarian pairing, do not be picky eaters, exercise appropriately and do not lie flat, return to the basics without tossing.
If symptoms such as progressively worsening muscle weakness, muscle stiffness, flesh throbbing, convulsions, difficulty swallowing, or speaking, should prompt medical attention. Although these symptoms do not mean ALS and may be caused by other problems, a visit to the hospital for specialist treatment can be helpful for early diagnosis.
Comprehensive: Guangzhou Daily, Chao News, Beijing Radio and Television Life Channel "Healer", Health Appointment, CCTV News
Source: Hangzhou Daily