分类归档 zudao

G.E.M. G.E.M.’s 14th wave of the new album Apocalypse, The Sky is Unlimited, was launched. So far, all seven letters to heaven and seven replies to heaven have been released, and all 14 new songs and 14 MVs in G.E.M. G.E.M.’s new album Apocalypse have been released. This time, G.E.M. G.E.M.’s new album was released in the form of an unprecedented "musical series", with two new songs and two MVs updated and serialized once a week.

The whole album is performed by G.E.M. G.E.M. as a singer, screenwriter and producer. From concept planning to songwriting, to MV script writing and filming producer, it is sincere and sincere. The new album works continue to lead the music lists at home and abroad, with outstanding achievements, and set off an unprecedented discussion upsurge on social platforms, so that more people can join this journey of enlightenment about love.

"The Sky Without Limits" hopes to go online and write a perfect final chapter for the journey of enlightenment.

The music series Revelation takes the promised land, wasteland and the real world as the story background, and tells the story of two protagonists, Gloria (played by G.E.M. G.E.M.) and Qiu (played by G.E.M. G.E.M.), owning, losing, searching, gaining and reborn in the real and metacosmic world. Qiu lost her lover in an accidental car accident, and fell into deep remorse and remorse. After losing a leg, she was no longer willing to face herself, and chose to escape to the "paradise" of the virtual world and live as a virtual human Gloria with a perfect appearance. After all kinds of experiences, Gloria, Evan and Qiu’s lives intertwined and influenced each other, and finally Qiu slowly walked out of the past haze and stopped abandoning herself.

Previously, the song "There is no limit in the sky" had released a song fragment of 1 minute and 30 seconds. This song is no stranger to many fans, and it is a song that everyone is looking forward to hearing in full version. "There is no limit in the sky, my future is boundless, and I will fly to a bluer tomorrow when I break my cocoon." The song is not only an unexpected expectation of G.E.M. G.E.M., but also the confidence to really let love live in my body after receiving six letters from heaven. At the end of the song, M9 Marginal Youth Singing Choir was invited to participate in the chorus, which meant that the new generation also had a boundless future. The 14 songs of G.E.M. G.E.M.’s new album are rich and diverse. On the basis of retaining the unique Deng style, they are also infused with refreshing styles, including gospel pop, pop rock, Trap, rap and psychedelic Disco. In the arrangement, G.E.M. G.E.M. is constantly breaking through and innovating, and colliding with different musicians, creating a perfect release space for emotional generate.

70 days and nights of immersive companionship, new album, hot reputation and double harvest.

From the closing of G.E.M. G.E.M. on July 16th to the release of his new album on September 23rd, this journey of enlightenment has gone through 70 days and nights. G.E.M. G.E.M. has changed the name of Weibo since the warm-up period, presenting an immersive meta-cosmic experience from the perspective of Gloria- Gloria Tang, updating the daily life of Gloria- Gloria Tang and Evan- Evan every day, sharing feelings and experiences, and interacting with fans by parachuting for many times, and answering questions from netizens as Gloria in the comment area of Weibo, so that the audience can immerse themselves in the atmosphere of the promised land and feel the story on the spot. During the release period, the "Revelation-Drama Meeting" will be broadcast live twice a week, face to face with the audience to share the behind-the-scenes experience of creation, talk about the understanding of love, and hope to influence life with the most real life. G.E.M. G.E.M. is doing his best to bring you works of seeing love, believing in love and returning to love.

The new album "Revelation" attracted widespread attention as soon as it was released. The video creation of G.E.M. G.E.M.’s new album "Revelation" in the form of cover, performance, and second creation is endless, and the audience is interpreting the "Revelation" about love in different ways. In terms of word-of-mouth, some netizens commented that "the album brought by G.E.M. G.E.M. after a lapse of three years has lived up to expectations", "the broad vision and broad mind have made the Chinese music scene see new hope and future" and "once again deeply felt what love is". The double authentication of numbers and word-of-mouth recorded this vigorous love "Revelation".

G.E.M. G.E.M.’s eighth full-creation album "Revelation" after three years’ sincere training has come to a successful conclusion, and G.E.M. G.E.M. has opened a new chapter in the history of love for Chinese music. Although the road to enlightenment has come to an end temporarily, love will never stop. Let’s look forward to G.E.M. G.E.M. bringing more high-quality works to the public in the future.

　　CCTV News:Recently, the "scientific" gossip list was released in August, in which the first "African swine fever" epidemic in Northeast China was refuted, and the statement that "eating sick pork will kill you" was refuted. In addition, the statement that appendicitis is caused by exercising immediately after meals, taking "online celebrity Pill" orally can prevent sunburn and whiten skin, the low outdoor visibility in July and August in Beijing is caused by heavy pollution, and the longer the shelf life of food is, the more preservatives there are.

　　It is understood that the monthly "scientific" gossip list is guided by Beijing Science and Technology Association, Beijing Netcom Office and Capital Internet Association, and jointly released by Beijing Science and Technology Journalists’ Editors Association and Beijing regional websites, with the support of the Science and Technology Communication Professional Committee of China Popular Science Writers Association, China Evening News Science Editors’ Association, Shanghai Science and Technology Communication Association and Beijing Science and Technology Information Research Institute.

　　So, what are the rumors in the past August? The latest issue of the monthly "Science" gossip list is announced for you ↓

　　Myth 1

　　Shenyang confirmed the first case of African swine fever in China, and eating sick pork will kill you.

　　truth

　　Will not infect people, high temperature can kill.

　　African swine fever was first discovered in Africa as a severe infectious disease that harmed the pig industry, and originally only existed in sub-Saharan African countries. However, with the increase of trade, African classical swine fever virus is widely spread through flights or port wastes, pork and its products. At present, African swine fever has occurred, spread and spread in many countries around the world, especially in Russia and its surrounding areas. Therefore, the African swine fever discovered in China this time is probably imported from neighboring countries.

　　Although African swine fever is fatal to pigs, it does not infect other animals.Will not infect people.. Moreover, classical swine fever virus can be killed by high temperature, high acid or high alkalinity. for exampleThe infected pork will be killed after 30 minutes at a temperature above 70℃.Considering that the heating in pork cooking is generally more thorough than this condition, there is no need to worry.

　　In addition, the epidemic situation of swine fever found in Shenyang this time has been controlled, and all the pigs infected with African swine fever have been culled and buried, and the epidemic area has been blocked. There is basically no possibility of buying "plague pork" in the market, so this swine fever incident will not affect everyone’s eating pork.

　　Myth 2

　　There is a rare high temperature of 32℃ in the Arctic, and polar bears are becoming extinct.

　　truth

　　The number of polar bears is expected to be "stable to rising" in 2018.

　　The "Arctic" covers a large area. There are also dense forests and tundra full of flowers in the Arctic Circle, and there are big cities, pastures and farms. The high temperature of 32℃ occurred on the northwest coast of Norway, which is not the habitat of polar bears, and affected by the North Atlantic warm current, the temperature was warmer than that of the Arctic region at the same latitude.

　　At present, there are about 26,000 polar bears, which are divided into 19 populations. According to the data forecast as of July 2018, overall, the number of polar bears is expected to be "stable to rising" in 2018. Therefore, it is not accurate to say that polar bears are "extinct".

　　Myth 3

　　Black Heart Hotel uses flour mixed with toilet paper to make steamed bread, which is proved by video.

　　truth

　　What looks like toilet paper is actually gluten.

　　The video of making steamed bread with toilet paper that is wildly circulated on the Internet is similar to the routine of "noodle glue" and "floss cotton" last year. MantouzhongWhat looks like toilet paper is actually gluten.Not only steamed bread, but almost all flour products, such as bread, fried dough sticks, noodles, etc., can be washed out by this washing.This is a normal phenomenon, gluten is not harmful to human body.

　　Moreover, the feasibility of using toilet paper to make steamed bread is too low. First of all, the cost of toilet paper is not necessarily lower than that of flour, and making steamed bread with toilet paper does not conform to the basic common sense of economics. Secondly, the taste of toilet paper and steamed bread flour is very different, and it can be distinguished as long as it is eaten in the mouth. The main components of toilet paper are straw pulp and tree pulp, and its essence is cellulose. It looks soft, but it is not chewy. Flour is mainly starch and protein, which is easily chewed and eaten.If you really use toilet paper to make steamed bread, you will see through it when you eat it.

　　In fact, the "legend" of making steamed bread with toilet paper has been around for many years. The government regulatory authorities have not found the real counterfeiters, and the testing institutions have not detected this kind of steamed bread.

　　Myth 4

　　Extracting oral mucosal substances can detect children’s natural genes.

　　truth

　　It is difficult to link genetic testing with "talent"

　　By extracting the substances from children’s oral mucosa and sequencing the genes, we can find out some advantageous genes that children have, and then carry out targeted cultivation to make them become geniuses? The concept of "natural gene" testing first appeared in 2008. At that time, due to the hype of commercial organizations, "natural gene" testing set off an upsurge in the United States, but it was later stopped because of lack of scientific basis and unethical.

　　From the perspective of basic science, it is true that we can find some tendentious characteristics such as sports ability and behavior pattern through genetic examination, but it is still difficult to link with "talent".For example, sports ability is also influenced by the development of human nervous system and circulatory system; As for thinking ability and artistic comprehension ability, it will be influenced by the acquired growth environment, and it is impossible for a paper test report to predict the future of children.

　　Myth 5

　　The longer the shelf life of food, the more preservatives are added.

　　truth

　　The shelf life is related to food characteristics and sterilization technology.

　　The shelf life of food is related to the characteristics of food itself, sterilization technology and packaging form. For example, products such as vinegar and alcohol have a long shelf life, because these foods themselves have the effect of inhibiting the growth of microorganisms. In addition, some food countries allow not to indicate the shelf life, which is also related to the characteristics of the food itself.

　　Some milk products also have a long shelf life, which is due to the way of high-temperature sterilization and vacuum packaging, which isolates oxygen. Generally, the shelf life of foods processed and packaged by this kind of processing is relatively long, but it is not caused by adding too many preservatives, and the shelf life of foods does not correspond to the amount of preservatives added.

　　Myth 6

　　Taking online celebrity’s "Whitening Sunscreen Pill" orally, you can gain the dual effects of sun protection and whitening.

　　truth

　　The effect is similar to eating vitamin tablets and drinking lemonade.

　　Whitening sunscreen pills are not drugs, but belong to the ranks of health care products. In addition, the reaction process at the molecular level of cells in the human body is extremely microscopic, not as simple as drinking water when thirsty. Even if whitening sunscreen pills can really play a role in partially inhibiting oxidation, this process is extremely slow and negligible, and it is absolutely impossible to complete it by oral health care products. Its function is similar to taking vitamin tablets and drinking lemonade, and even not as fast as some people’s own metabolism.

　　On May 22 this year, the US Food and Drug Administration (FDA) warned some companies that produce oral sunscreen products on the market, saying that the so-called sunscreen pills sold on the market actually have little effect.In addition, the FDA also said that it had ordered the company to stop selling these products, making it clear that they did not protect the skin.

　　Myth 7

　　You can’t do strenuous exercise after meals, or appendicitis will occur when food runs into the appendix.

　　truth

　　The theory that food enters the appendix by exercise after meals is unscientific.

　　The appendix is located in the middle and lower part of the intestine, and after people eat, their stomachs need more than 4 hours to be alone with food before they are allowed to enter the intestine and be absorbed. Therefore, the theory that food enters the appendix after meals is unscientific.

　　In addition, when food passes through the "reception" of duodenum, jejunum and ileum from the stomach and enters the cecum near the appendix, it is no longer the original shape. Food that has become mushy is unlikely to enter the appendix and block the intestinal cavity.

　　For the case of indigestion, even if it is not exercise after meals, strenuous exercise at ordinary times may also lead to appendicitis.

On November 17th, 2023, Guangzhou International Auto Show was held as scheduled, and Huawei HarmonyOS Zhixing made its debut at Guangzhou Auto Show. Many heavy-duty models such as Wujie M5, Wujie New M7, Wujie M9 and Zhijie S7 participated in the exhibition.

HarmonyOS Zhixing made its debut at the auto show, and Huawei’s smart travel strategy was upgraded.

On November 9th, Huawei officially announced that Huawei’s smart car selection business had been upgraded to HarmonyOS Intelligent Mobility Alliance at the press conference of smart travel solution and new S7 product pre-sale. This Guangzhou Auto Show was the first time for HarmonyOS Zhixing to participate in the auto show, which brought many heavy-duty models in the intellectual and intellectual circles.

HarmonyOS Zhixing aims to make use of Huawei’s technology accumulation in ICT field over the past 30 years and Huawei’s excellent experience in quality control, sales service and brand marketing accumulated in consumer business over the past 10 years to lead the strongest technological innovation of smart cars, continuously climb the technological peak of the era of smart cars, and cooperate with China automobile industry partners to create excellent smart electric car products and provide users with the ultimate smart travel experience.

Smart car with high energy and large space, Smart S7 redefines the new form of smart car.

HarmonyOS Zhixing’s first car, Zhijie S7, also landed at the auto show for the first time. Zhijie S7 locates a high-energy and large-space smart car, which is the first model released by HarmonyOS Zhixing, which is an upgrade of Huawei’s smart car selection business. This model is produced using a brand-new platform of Huawei’s full-stack smart car solution. In design, Zhijie S7 and Wenjie M9 adopt the same family design, and at the same time, it has a comfortable large space and a performance experience comparable to super-running. It is equipped with Huawei Turing smart chassis and HarmonyOS 4 smart cockpit for the first time. With a series of leading technologies such as HUAWEI ADS 2.0 advanced intelligent driving system and a new generation of HUAWEI DriveONE 800V silicon carbide power platform, it will bring the ultimate smart travel experience to users in the car market.

The pre-sale price of Zhijie S7 is 258,000 yuan, and it has exceeded 10,000 units since the pre-sale started on November 9, and will be officially listed in November 2023.

Full-scene wisdom flagship SUV, asking the M9 to bring the leading generation of technology luxury experience.

As Huawei’s fully empowered flagship SUV, the M9 will make its debut at the auto show. As a D-class full-size SUV platform, Wenjie M9 is built with a brand-new platform of Huawei’s smart car full-stack technology solution, which not only brings a "ceiling" level smart cockpit and intelligent driving experience, but also brings a leading generation of intelligent experience, including technologies such as Huawei Turing Smart Chassis, Huawei Megapixel Smart Headlights, Huawei AR HUD, Huawei Light Field Screen, HUAWEI SOUND, Pangu AI Large Model, etc., bringing users a leading generation of technological luxury experience.

The M9 was popular before it was listed, and the booking volume has exceeded 30,000 units, which will be officially listed in December 2023.

The mainstay of Wen Jie family, Wen Jie M5 and Wen Jie Xin M7 continue to sell well.

As the "ballast stone" of Wen Jie family, Wen Jie M5 and Wen Jie Xin M7 also appeared at HarmonyOS Zhixing booth. Wenjie M5 Smart Driving Edition is the first high-performance smart medium-sized SUV equipped with "Double Smart Ceiling" HUAWEI ADS 2.0 and HarmonyOS Smart Cockpit 3.0 at the same time. Wenjie M5 series has been loved and recognized by users since its launch, and the cumulative delivery has exceeded 120,000 units. It is worth mentioning that the M5 urban glow suit created with the trend artists also appeared on stage, adding more personality and vitality to this star model.

Wenjie’s new M7 has invested more than 500 million yuan in all-round renovation and upgrading, positioning a 250,000-class luxury and smart large SUV, integrating great wisdom, large space and super safety. The five new M7 seats in Wenjie have a changeable space, and the layout of six seats is more flexible. With excellent product strength, innovative technology leading and super-high intelligence-price ratio, the new M7 series in Wenjie has won full recognition from the market and consumers, and it has definitely exceeded 90,000 units in 64 days after listing.

HarmonyOS Zhixing is Huawei’s new exploration in the field of smart travel. It not only deeply cultivates the core technologies such as intelligent driving, intelligent cockpit, intelligent driving control and intelligent vehicle control, but also promotes the intelligent development of the automobile industry through technological innovation. It also shows Huawei’s forward-looking layout of the automobile industry, and cooperates with partners to create an open and shared smart travel experience, bringing users a more extreme travel experience.

　　In Liangshan, Sichuan, there is a place 2500 meters underground. In this "China Jinping Deep Underground Dark Matter Laboratory", there is an experimental hall 40 meters long, 6.5 meters high and 8.5 meters wide. This is the deepest and best underground laboratory in the world at present, and it is also the place where the "Panda Project" is implemented.

　　In Columbus, Ohio, USA, it was reported at the 2017 International Conference on High Energy Particle Astrophysics a few days ago that China’s "Panda Project" project team issued the strongest restriction on the measurement of dark matter particle properties, and China scientists once again took the lead in the sensitivity of direct detection of dark matter and took the lead in achieving significant detection results. This is the second time that the "Panda Project" released the most sensitive dark matter detection results in the world after the first detection results of the 580 kg detector were released two years ago.

　　What is dark matter? There is dark matter in the universe, dark matter in galaxies, and dark matter around us, but we can’t see it with our eyes. It is silent and difficult to leave traces. It does not emit electromagnetic waves of any band, nor does it interact with any electromagnetic waves. Because there is no direct electromagnetic interaction with ordinary matter, dark matter does not emit light, which is similar to "ghost" and cannot be seen in the usual way. Nevertheless, dark matter should not be underestimated by anyone, because the research and analysis so far show that dark matter accounts for more than 80% of the total mass of cosmic matter.

　　Uncovering the essence of dark matter particles is one of the most important scientific goals in physics and astronomy in the 21st century, and the international scientific research on detecting dark matter particles is in full swing. In order to detect dark matter, scientists have thought of many methods. The method of China’s "Panda Project" is to hit a xenon atom as a target. If dark matter particles collide with the xenon atom, this collision will be converted into recoil energy of the xenon atom, and a photoelectric signal will be sent out, which will be captured by the detector.

　　In the view of Dr. Ji Xiangdong, the leader of the Panda Project and professor of Hongwen at Shanghai Jiaotong University, scientists’ method of detecting dark matter particles is similar to "waiting for a rabbit". Dark matter particles are like rabbits running in droves, and xenon atoms are like a tree in the forest. It is inevitable that one or two rabbits will be killed under a tree and become the trophy of scientists. The crux of the problem is that there are not only rabbits in the big forest, but also lions, tigers and other animals. Whoever bumps into them is louder than rabbits. Therefore, to find a "forest" with no or few other creatures, China Jinping Underground Laboratory is the ideal "forest".

　　In Jinping Mountain, Sichuan, there is a 2400-meter-high mountain cover, just like a natural barrier blocking cosmic rays. According to the measurement, the cosmic ray flux in the laboratory can be reduced to one-tenth to one-hundredth of the ground level. However, the underground laboratory is located in marble instead of granite, and its natural radioactivity is quite low. Experimental tests show that its natural radioactivity is lower than that of rocks outside the cave, which provides very good conditions for dark matter direct detection experiments.

　　Under this condition, in the past year, the long-term operation of the 580 kg liquid xenon detector in China has improved its sensitivity to the interaction between dark matter and ordinary matter by more than four times. However, the 580 kg liquid xenon detector used in the "Panda Project" has not detected a collision event of dark matter particles, so China scientists have reached the upper limit of collision probability. This discovery has once again set a new world record for limiting the properties of dark matter particles.

　　In scientific research, finding a road is as important as blocking a road, and "not seeing it" is equally meaningful.

　　As one of the most important mysteries in basic physics, the study of dark matter has attracted many physicists all over the world to work hard for it. Several international cooperation groups are working hard to "catch" dark matter. In order to seize the opportunity, it can be said that every minute is lost. All experimental cooperation groups expect to be the first to find the signal of dark matter particles, and the international competition for dark matter detection is fierce.

　　In the international dark matter detection competition, the LUX cooperation team of the United States, which has finished its operation, officially released the final data of the 250 kg detector in the past four years in January 2017, exceeding the world’s most sensitive detection results published by the Panda Project in July 2016. The XENON1T detector located in Italy has become the largest dark matter detector in operation in the world at present, and the amount of liquid xenon in the detection area is 2 tons. This experimental cooperation group also published the first result in May this year, and its sensitivity once again surpassed that of LUX in the United States.

　　Although the volume of the second phase detector of "Panda Project" is less than one-third of that of XENON1T in Europe, the cooperative team has obtained the latest detection results beyond XENON1T through the continuous and stable operation for nearly half a year, and achieved the second lead.

　　Chen Hesheng, an academician of the China Academy of Sciences and former director of the Institute of High Energy Physics of the Chinese Academy of Sciences, said that the latest results of the second phase of the Panda Project show that the deep dark matter detection experiment in China has been at the international leading level; Zhao Zhengguo, an academician of China Academy of Sciences and an experimenter of high-energy physics, thinks that it shows that scientists in China can make international leading achievements in the most advanced fields of exploring the universe and nature, and also in China.

　　Talking about the next step, Liu Jiang, a scientist of Panda Project and a professor of Shanghai Jiaotong University who is in charge of experimental data analysis, said that the first step is to increase the volume of the detector and the second step is to reduce the noise as much as possible. He revealed that preparations for the next generation of detectors are in full swing, and the 580 kg liquid xenon dark matter detector being used is upgraded to 4 tons. The components of the new detector are already under construction, followed by assembly, alignment and testing. Scientists in China hope to stop the operation of the 580 kg liquid xenon detector in 2018, fully carry out the experiment of the upgraded detector, and strive to obtain the first batch of data of the new detector in 2019. Our reporter Cai Wenqing

　　BEIJING, Beijing, April 18 (Lv Chunrong) There is such a group whose life is particularly fragile. Since childhood, they can’t stand bumps and bumps. A small wound may cause bleeding, and changing a tooth may even be fatal … … They are hemophiliacs, also known as "glass men".

　　April 17th is World Hemophilia Day. Recently, public opinion has once again focused on this group. What does it mean for a family to have a hemophiliac? How should hemophiliacs live? How to make the life of "Glass Man" no longer "fragile"? These are worthy of social attention.

　　"The birth of a child brings bad feelings."

　　Two years ago, Sun Ke, an electrician in a shopping mall in Chongqing, and his wife had the crystallization of love, and her wife gave birth to a son for him.

　　Last June, a little naughty son was admitted to the hospital because of excessive bleeding. In the hospital, Sun Ke’s son was diagnosed with hemophilia. Looking back now, Sun Ke said that at that moment, he was stunned.

　　Hemophilia, as a rare disease, has a low incidence. Wu Runhui, chief physician of the Hematology Cancer Center of Beijing Children’s Hospital, told the reporter of Zhongxin. com (WeChat WeChat official account: cns2012) that the incidence of hemophilia in children is almost the same all over the world, with one or two out of about 10,000 people. According to the population base, there are about 100,000 patients in China.

　　His own child has become one of these 100,000 people, and this reality once made Sun Ke unacceptable. In Sun Ke’s view, before the child was diagnosed with the disease, he had a house and a child. He originally thought that he had a happy nest of his own, but he never thought that the plan was disturbed by a rare disease.

　　Accepting the reality has become Sun Ke’s only choice. Previously, Sun Ke was not ignorant of hemophilia. He knew that it was a lifelong disease, and it was difficult to treat. Patients were often very fragile. Once they were injured, they might bleed excessively, and even more seriously, they would be disabled for life.

　　After his son was diagnosed, Sun Ke began to take the initiative to learn all kinds of knowledge about hemophilia and join the circle of hemophiliacs.

　　"Fortunately, my son’s illness was discovered early. As long as he insists on playing the factor in the future, his son can still grow up healthily like a normal person." Sun ke said.

　　Sun Ke’s "beating factor" refers to the infusion of exogenous coagulation factor preparation, which is the main method to treat hemorrhage in hemophilia patients at present.

　　But soon, Sun Ke had a deeper understanding of the difficulties in the treatment of hemophilia. For his family, the first difficulty was the high treatment cost.

　　"A domestic coagulation factor costs several hundred yuan, and an imported one costs one or two thousand yuan." Sun Ke said that his child was given more than 1,000 yuan of injections, and he had to take four injections a month. Although medical insurance can reimburse 70%, it also needs thousands of yuan of treatment expenses a month.

　　However, the real problem does not stop there. "As the child’s weight increases, the dosage will continue to increase and the cost will continue to rise, but that’s it. I still hope that the child will grow as tall as possible and the healthier the better." Sun Ke said that every parent wants his child to become a dragon, even if his child has a rare disease.

　　Sun Ke said that his greatest wish is to do his best to make children grow up healthily, live a dull life, and live one day at a time.

　　"I would rather divorce than give up my children."

　　Because of the child’s illness, the life of Sun Ke’s family is doomed not to be too dull. Sun Ke’s wife is currently a full-time mother at home, and her main job every day is to take care of the children carefully.

　　Because of the difficulty of treatment, in many families with hemophilia, there are also cases of choosing to give up conventional treatment and have another child.

　　Tamia Liu, a 25-year-old Guizhou hemophilia patient, was in poor health since childhood, but he was not diagnosed with hemophilia until he was 19 years old. Although his parents didn’t completely give up his treatment, they would spend thousands of dollars on medicine regularly, but the high treatment cost made his parents powerless. Tamia Liu understands this very well. "I only want to play the factor when the disease is particularly serious, otherwise I can only endure it silently because I don’t want to bring more burden to my parents."

　　The present situation of Tamia Liu is not what Sun Ke wants to see. For Sun Ke, although the economic burden may be heavy if he continues to treat his children, the psychological burden will be even heavier if he gives up his children. "I’d rather get divorced than have any more children. Since you have such a child, you have to face him and it is your responsibility to raise him. "

　　However, the reality is often more cruel. Just relying on routine treatment like Sun Ke’s children can’t completely guarantee that patients can grow up like normal people.

　　It is understood that the current treatment plan for hemophilia in China is mainly "on-demand treatment", that is, the factor is given after bleeding. However, if hemophilia patients are not treated in time and effectively after bleeding, it is very likely that joint deformity will occur, resulting in lifelong disability and even life-threatening.

　　In Sun Ke’s view, at present, children can only be treated on demand, and in the future, if conditions permit, they will also be given preventive treatment, that is, regular injections of coagulation factors.

　　Today, in addition to the child’s medical expenses, Sun Ke has to pay a mortgage of more than 2,000 yuan every month. According to Sun Ke, in order to treat his children, he now takes on more jobs when he is free.

　　Sun Ke said, "Lazy people will let children stop taking medicine, and there is no hurdle. Nowadays, in many ‘ Old blood friend ’ With your help, my heart is stronger and I will stick to it. "

　　"Life-saving treatment costs at least 60,000 to 70,000 yuan a year."

　　Guan Tao, an "old blood friend" mentioned by Sun Ke, a hemophiliac and president of China Blood Friends Home Association, is one of them. Guan Tao, 45, has been in a wheelchair for more than 30 years. Over the years, he has been in a wheelchair to participate in public welfare activities all over the country, helping many hemophiliacs.

　　It is understood that China Blood Friends Home was established in September 2000, and it is a non-profit organization for hemophilia patients. All the leaders of this organization are patients with this disease or their families. At present, the number of patients registered in this organization has exceeded 5,000. "Home of Blood Friends" was registered in Beijing Civil Affairs Bureau in February 2012, and the organization name was Beijing Home of Blood Friends Care Center for Rare Diseases.

　　Committed to hemophilia public welfare work for many years, Guan Tao is most proud that hemophilia is the only rare disease that has been included in the national medical insurance policy. In Guan Tao’s view, many rare diseases have treatments, but the medicine costs are relatively expensive. For patients with lifelong diseases, it is impossible to pay by themselves, and many of them can only give up.

　　Although hemophilia treatment costs can be reimbursed, reducing the financial burden of patients, however, some problems are still very serious.

　　"The government has the responsibility to manage it, and it is also in charge now." Guan Tao said that the cost of treatment varies from place to place. In a better place, the cost of life-saving treatment for an adult patient is at least 60,000 to 70,000 yuan a year, but now the national average reimbursement range is between 50% and 70%, that is, patients still have to pay 20,000 to 30,000 yuan out of pocket, and many patients’ families still can’t afford it.

　　In addition to economic problems, hemophiliacs will face various problems in their lives. In Guan Tao’s view, because this disease is a lifelong disease, patients have different difficulties at different stages. For example, children will face diagnostic problems when they are born, and parents will lack treatment knowledge. Subsequently, it will also face the problem of how to reimburse and the problem of drug purchase. In addition, problems such as schooling, employment and marriage also exist in reality.

　　"Nowadays, there is a reality that many hemophiliacs in China are disabled and leave school very early." Guan Tao said that after all, without a sound body, knowledge and education, it is difficult to have the skills to integrate into society, and marriage and employment are bound to be affected.

　　At present, Guan Tao’s non-profit organization has carried out a series of work. According to reports, on the one hand, they carry out relief work, in addition to drug relief, there are also financial assistance, and the funds they operate are several million yuan. At the same time, they will also help their patients find jobs. They had previously cooperated with Alibaba Cloud Customer Service and sent more than 300 patients to work last year. In addition, they will also carry out online and offline education to promote some popular science knowledge to patients and the public.

　　"They live too heavy, and society should not discriminate."

　　Obviously, the road to treatment for hemophiliacs is not smooth, with late diagnosis, expensive medical treatment and discrimination. These are the real problems before them.

　　According to media reports, there are nearly 100,000 hemophiliacs in China, but only about 1/10 of them are registered in 43 hemophiliacs clinics nationwide. This reflects that most hemophiliacs in China are diagnosed late at present, which means that many patients are in danger of disability.

　　Dr. Wu Runhui said that the earlier the diagnosis and treatment of hemophilia, the better. Otherwise, the patient may miss the best treatment period because of misdiagnosis, making the patient disabled or even killed. However, even in developed countries, the disease is difficult to be diagnosed in the neonatal period. "On the one hand, the public awareness is not enough, and they are not aware of the existence of this disease; On the other hand, this disease was originally a genetic disease. Although there is a certain possibility of genetic variation, it generally depends on heredity, and no relevant screening was carried out before birth. "

　　On the one hand, it is difficult to diagnose, and on the other hand, it is expensive to see a doctor. At present, although hemophilia is included in the scope of medical insurance reimbursement, it is also difficult to reimburse in some places.

　　"For example, hemophilia ‘ Preventive treatment ’ , many places see ‘ Prevention ’ The word "two words" will not be reimbursed, which is actually due to translation problems. " Wu Runhui said, "Compared with ‘ On-demand treatment ’ The regular injection method adopted for preventive treatment is safer. "

　　However, in addition to illness, social discrimination has also increased the burden of many patients. Wu Runhui said, "This disease is actually not terrible. If patients are treated normally, they can be normal people and return to society. If they are not treated, it may be a heavy burden to society. Before, even some universities were unwilling to accept these people, but in fact, patients now have safe medication as a guarantee and receive normal treatment, and there should be no discrimination in this respect in society. "

　　Wu Runhui said that some hemophiliacs live a heavy life, and social discrimination makes some patients afraid to explain their illness, which makes them more dangerous. Society should be more tolerant and let these "glass people" integrate into society, so as to really help them.

　　Guan Tao also appealed that the current society can’t talk about "concern" about this disease, but only "know" at most. Only when the public really pays attention to this rare disease can we better help and care for this special patient group. (At the request of the interviewee, some characters in the text are pseudonyms) (End)