Editor's note: May 8, 2024 is the 31st World Thalassemia Day. Thalassemia (referred to as thalassaemia) is an inherited hemolytic anemia disease, and the area south of the Yangtze River in mainland China is a high-incidence area, and severe thalassemia requires long-term blood transfusion and the survival rate is not high. As a genetic disease caused by genetic defects, thalassemia is not contagious, but in reality, thalassemia patients are susceptible to various social pressures, and their quality of life is further reduced. Yunji starts from the stories of the people around you and takes you into their lives.
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Liu Yuetong's furnished home
Wood-colored furniture and decorations connect the entire room space, on the table where the Apple MAC machine is placed, the hand-made grinder also exudes the aroma of coffee, and in the two-story "cat villa", a black and white beautiful short cat holds the glass door frame and grinds its teeth slightly, and the most colorful in a room is a "Science Fiction World" magazine.
The afternoon sun shines warmly through the high-rise sealed windows and shines on Liu Yuetong's body. He has a fair complexion, a larger head than his body, wide eye space, and distinct bulges in his cheekbones, and in a general sense, he is quite handsome and even has some feminine qualities. However, these are the obvious features associated with the disease that are not well known to the general public, and he is a typical thalassemia patient.
Liu Yuetong at work
"For as long as I can remember, I've been in a state of lack of energy. Always not getting enough sleep. The body is like a battery that can never be fully charged, and it is used at a discount everywhere. ”
Thalassemia, also known as marine anemia, was first discovered in Italy, Greece, Malta and other regions along the Mediterranean coast, so it is called thalassemia, referred to as thalassemia. Other general anemias are often due to iron deficiency, which can be treated through dietary conditioning or iron supplementation. Thalassemia is a genetic disease caused by autosomal gene defects, and for a long time, there was only hematopoietic stem cell transplantation as a radical cure, and gene therapy has been quite effective in recent years, but it is still in the clinical trial stage.
Geographical distribution of thalassemia
Patients with thalassemia can be divided into three categories according to their severity: mild patients generally have no obvious symptoms, and the disease does not cause major distress to life; Patients with intermediate type will have mild to moderate anemia, often accompanied by dizziness, weakness of limbs, lack of energy, etc., but the severity is not as severe as that of severe patients; Severe cases often present in infancy, with chronic progressive anemia and gradual enlargement of the liver and spleen, with many children dying within a few months of life.
Geographical distribution and carry-through rate of thalassemia in China
At present, more than 200 genetic modules that can cause thalassemia have been reported worldwide. About 1.5% of the world's population, and nearly 100 million people, carry the thalassemia gene. The rate of thalassemia gene defects reported in various parts of the mainland is 2.5% to 20%, and the southern provinces and cities such as Liangguang, Yunnan, Hainan, Guizhou, Sichuan, Chongqing, Fujian, and Jiangxi are the high-incidence areas of the disease.
Most people with thalassemia only carry the thalassemia gene but do not show any symptoms of anemia, and are called thalassemia gene carriers. When only one of the husband and wife carries the thalassemia gene, the probability that the next generation is the gene carrier is 50%; If both couples carry thalassemia genes, their children have a higher chance of developing thalassemia, with intermediates accounting for 20% to 30% of them.
Unfortunately, Liu Yuetong is an intermediate patient.
01
"To be a sensible child, I also want to have someone else's life"
In the WeChat group of thalassemia patients, not long ago, another parent said that the sick child was weak, and his parents and teachers asked him to strengthen exercise, participate in military training and run every morning. But it didn't work, and even after a blood transfusion, the hemoglobin level would quickly drop to 60. ”
Hemoglobin plays an important role in transporting oxygen, and normal adult men and women have hemoglobin levels of more than 120 grams and 110 grams per liter of blood, respectively. Lack of qi, dizziness, chest tightness, and general weakness are common signs of anemia. According to common sense, exercise can increase oxygen intake, while promoting blood circulation and improving oxygen delivery capacity.
The principle of thalassemia
However, thalassemia is the opposite. "The hemoglobin of thalassemia patients is due to the mutation of the gene encoding hemoglobin, which causes the change of the spatial structure of hemoglobin and cannot become normal hemoglobin, just like the infants and young children in hemoglobin, which not only has poor ability to transport oxygen but is also very fragile, and exercise increases the demand for oxygen, which can easily trigger hemolytic reactions and rupture hemoglobin." Liu Yuetong contacted the other party as soon as possible and asked him not to participate in strenuous running, he did not expect that in today's medical knowledge is so popular, the public still has a misunderstanding of thalassemia.
As an "old patient" for more than 30 years, Liu Yuetong's growth is also full of misunderstandings. "When I was a child, I never dared to exercise vigorously in physical education classes, so I went to the hospital to get a certificate. But there are still some classmates who will say that I am pretending, afraid of hardship, and avoiding sports. ”
"When I was about 4 or 5 years old, people on the street heard that drinking pot water could make iron supplements, so I wanted to try it. Looking at the dark water, I didn't drink it in the end. ”
Rushing to the doctor may be the nature of all parents. "At that time, 'qigong' was very popular, and my parents also took me to try it many times, and there would be a 'master' who would work from my head or back to deliver energy."
And when he was an infant and toddler, more misunderstandings began to be borne by his parents. During the physical examination, it was found that the hemoglobin was low, and the doctor couldn't help but blame: "This child is anemic when he is only 8 months old." It must be malnutrition, as a mother, you still have to take care of your children. ”
"Actually, my mother has done her best to take me, and it can be said that I am meticulous, but you can imagine how wronged I was at that time." Liu Yuetong's memories come from a few words from his parents: after taking the medicine of iron and blood supplements, the hospital examination still did not improve, and his mother felt that it was abnormal, and it was definitely not ordinary anemia, so he and his father took him to Kunming for examination. Hemoglobin electrophoresis was preliminarily diagnosed with thalassemia.
"In 1991, I was only one year old. The Internet has not yet passed through the homes of ordinary people, and for this disease, which is unknown to the Lincang People's Hospital, the mother chooses to subscribe to magazines to find a way out. Her mother, who originally liked "Reader", plunged into various professional medical fields for the sake of her children, and "Chinese Pediatric Blood" (now known as "Chinese Journal of Pediatric Hematology and Oncology") became the first magazine she subscribed to.
Moment of hospitalization
Because of anemia, Liu Yuetong's resistance has always been very weak when he was a child, and he is very prone to illness. Injections and hanging water became the most accustomed things in his childhood. "My parents are both teachers, we live in the school, and the hospital is almost as familiar as home. When there were too many needles, the blood vessels became very slippery, and once I was poked 5 times and I didn't get it. Liu Yuetong said that even so, he was never afraid of injections, because he was even more uncomfortable if he did not take injections to treat his illness: "I never resisted, nor did I cry, I just hoped that I would be hit by one injection." ”
The "sensible" brought by thalassemia is not limited to this.
When I was 6 years old, my mother happened to see an introduction and treatment measures for thalassemia in "Chinese Children's Blood". In addition to being excited, she wrote a letter to the author, Professor Huang Lili, director of the Department of Pediatrics at the First Affiliated Hospital of Guangxi Medical University. The communication went back and forth, and it was agreed to go to Guangxi to see a doctor.
In the era when transportation was not yet developed, Professor Huang greeted a family of three from Lincang County at the entrance of the hospital. Liu Yuetong was diagnosed with thalassemia through genetic testing, and according to the data and treatment guidelines of his hemoglobin of about 80 at that time, Professor Huang recommended more conservative treatment measures - blood supplementation, iron removal and spleen resection.
Under normal circumstances, the spleen recognizes and removes red blood cells that have aged or been damaged, while retaining healthy hemoglobin. However, in patients with thalassemia who is inherently deficient in hemoglobin, the spleen can destroy it by mistaking it for abnormal cells, leading to more severe symptoms of anemia. When the spleen is removed, the destruction of hemoglobin can be reduced.
However, after the removal of the spleen, the body's self-filtration function becomes poor, the blood becomes sticky, the resistance in the blood vessels is greater, and the heart needs stronger thrust, which can easily lead to pulmonary hypertension and increase the risk of stroke. "However, in those days, there was no better way, and the two evils could only be the lesser of the two evils."
"My parents hid my plans for surgery, but I quietly heard and understood what the doctor said. Later, when my father told me that I was going to have an operation, I said don't worry, I already knew, always along. "From 6 to 11 years old, a couple carefully hides from their children, and kind-hearted children hide from them equally.
Concealing it, Liu Yuetong will not be less than the life challenges that healthy children have to face. First and foremost is academics. In primary school, there was not much academic pressure, and his grades were quite satisfactory; When I got to junior high school and high school, some subjects began to be unable to keep up.
Liu Yuetong felt that he was very confused throughout his middle school years, feeling as if the meaning of learning was only for this score, and he felt as if he was working harder than many healthy people, but he did not see results. "Looking back now, it's really not that I didn't work hard enough, it's that my body really can't keep up."
Liu Yuetong said that the No. 1 Middle School he attended, like many middle schools in backward areas, adopted a "Maotanchang-style" teaching model, with frequent examinations and evaluations, and strict teaching and dormitory management, which made everyone nervous all the time. "In high school, classes are held every Saturday, and evening self-study is until half past ten. It may not matter to normal people, but I feel that I can't sleep at all, and I am very sleepy. He said that when he was studying, he was relatively gentle, and after graduation, he reached the peak when he changed the principal, and it was impossible for him to persevere.
Traveling alone
In addition to his studies, he also had a childhood of gluttony and playfulness. "There always seem to be a lot of snacks at the entrance of the primary school, and I am really hungry to watch my classmates take away a pack of spicy noodles or sour plum noodles for one yuan or five dimes." Gluttony returns, but Liu Yuetong has witnessed the time and money his parents have paid for his treatment since he was a child, and he dare not and does not want to ask his parents for extra pocket money.
Snacks can be tolerated, but like other boys, they are not immune to games. At first, it was a "BB gun", a yo-yo, and later a popular mini 4x4. "The money to buy the bait early in the morning, or the dinner money given by the parents if there is an event at school in the evening and do not come back for dinner. Finally have accumulated enough, unpack a box of copper wires for a four-wheel drive car or wrap a motor by yourself, and you will be happy for a long time. ”
"When I was in junior high and high school, I had GBA and NDS (handheld game consoles from Nintendo Japan). My pocket money rose to 6 yuan, and after eating a fried bait block of three yuan and five, the money was deducted. Relying on saving money and pressing the New Year's money, I finally got the game console that I had in mind. Unexpectedly, on the first day I bought it secretly, it was found and confiscated by my father. ”
In the past, toys and games made Liu Yuetong briefly feel like living the same life as other classmates, and even felt that thalassemia seemed to be far away from him.
02
"Living with illness is also a kind of life, learning to reconcile with illness"
Another blow of reality happened in the immediate aftermath.
During his undergraduate studies at Yunnan Agricultural University, Liu Yuetong once had tonsil inflammation, and he took medicine for several days but did not get better, and the body inflammation aggravated and led to fever, so he had no choice but to go to the school doctor's office for treatment.
"I remember that my roommate took me there at 9 o'clock in the evening, and my blood pressure was only 20, and the doctor didn't dare to accept it, so I was transferred to the Kunming Rehabilitation Hospital, which cooperated with the school. However, the school bus came and pulled me there, and the doctor there didn't dare to accept me and asked me to transfer to the hospital. It was almost 11 o'clock, the school was in the suburbs and there was no taxi, and I felt a sense of despair that my family was not around. ”
The family members who were far away in Lincang urgently asked for help, and Liu Yuetong was finally taken to the emergency department of Yunda Hospital by a friend of his parents for an infusion. "In fact, the blood picture does not affect the treatment, only the conventional fever reduction needle is needed, and the fever will be reduced the next day. But from the doctor's point of view, fever is normal, and blood pressure is abnormal. So, because of thalassemia, it is very likely that a small inflammation of the tonsils may kill me because the hospital does not accept it. ”
Ongoing blood transfusion therapy
Regarding the physical condition, Liu Yuetong himself has the initiative: "Because I am weak and sick, I slowly became familiar with the doctor. I directly 'directed' them to give the injection. Later, when I got sick at school, as long as the cause was diagnosed, I knew what medicine to use, such as tonsil inflammation, so I asked the doctor to prescribe penicillin, levo-oxygen, and energy group drugs. ”
Factors outside of his body made him very helpless. "Once, I also had a fever that couldn't go away. I still have a little strength, I ran to the hospital to get an injection, but the blood was too low, they had to transfuse blood before treating me, and I had to inject washed red blood cells, which was very expensive, 2,000 yuan for a single time, and I walked away in disgrace, and finally took medicine by myself. ”
"Another time, I had mumps and went to the ENT department at the Red Cross Hospital, and the doctor told me to go to the hematology department first. After running back and forth several times on both sides, they couldn't see a disease, so they had to go to see a Chinese medicine doctor, and when their condition improved, they went to the workers' hospital for treatment. Liu Yuetong secretly decided in his heart that the hospital in Kunming was too troublesome, and he would never go to the hospital if he could be cured.
In the process of studying and seeing a doctor, Liu Yuetong became more and more aware that in the face of his future independent life, he could not fight with others to improve his academic qualifications and do mental work, which was his way out.
Liu Yuetong studied carefully in the classroom
In order to apply for the postgraduate examination of cell biology at Yunnan University across majors, he studied professional courses on his own in the form of video classes and reading books, and prepared for the exam according to a strict schedule for more than a year. In his senior year, when he finally waited for the good news that he had passed the written test and interview, he didn't have time to be happy, and a bucket of cold water made him sober up the reality of thalassemia patients.
He was not included in the final admission list. After being stunned, he hurriedly contacted the school to find out the reason, but it turned out that the physical examination of the school hospital failed. Normally, the body's hematopoiesis occurs mainly in the bone marrow. In thalassaemia, hemoglobin synthesis is reduced, and the body initiates additional hematopoietic pathways outside the bone marrow. Because of additional hematopoiesis, Liu Yuetong's spinal bones are different from normal people in front of CT, showing large black shadows, which are easily misdiagnosed as myeloma and other malignant diseases.
"My mother went to the school to write several letters of guarantee, and I went to a tertiary hospital to get a certificate, and worked hard for a few days to submit all kinds of required materials. In the end, the school finally agreed to admit it. ”
As these new challenges arise, old ones are also being exacerbated. In order to compensate for the long-term anemia, the body will increase the absorption and storage of iron, which will lead to iron overload, which will lead to liver cirrhosis, heart failure and other diseases.
sickbed
"At that time, there were three main ways to remove iron, intravenous injections had to be injected for 12 hours each time, and I would be nauseous and want to vomit when I ate ferrilamine, and the third was deferasirox, which was not only convenient to take orally, but also had a good effect. But this medicine is very expensive, a box of 2,800 yuan only 28 tablets, according to my weight to eat 10 boxes a month, the cost of a month is 28,000, and it lasts for a long time. ”
Enduring the "chronic lack of electricity" in his body, in 2013, Liu Yuetong, who had just been admitted to graduate school, went to Nanning, Guangxi, with his mother, and fate once again made up for him in a different way.
After a lapse of 17 years, Professor Huang, who had been in contact with his mother, had lost contact with him after he moved, and in the Department of Hematology of the First Affiliated Hospital of Guangxi Medical University, they met with Director Lai Yongrong and Dr. Liu Rongrong, and learned that the R&D company of deferasirox was doing a phase IV clinical trial and could provide the drug for free.
Kits
Liu Yuetong immediately decided to participate, and according to the agreement, he needed to go to Nanning every month for examination and medicine; For the first 8 weeks, I even had to go to a blood test every week to check for adverse effects of the drug. So, he took the train every Thursday, went to Nanning the next morning, went straight to the hospital, did the examination, got enough medicine for the next month, and returned to Kunming after staying in Nanning for a day on the weekend.
Greet nature by car
On the train, Liu Yuetong always has no intention of the swaying scenery outside the window, in addition to being used to it, more importantly, he has to carefully calculate the cost of each time. "The round-trip fare is 500 yuan each time, 300 yuan for two days of accommodation, and the cost of 1,000 yuan is not a small number for me."
This participation is 3 years, and Liu Yuetong also recorded the data of each time and made a data detection line chart. Serum ferritin levels in the blood have finally dropped from a severe iron overload of 4000 μg/L to 500 μg/L, which is close to normal, although it is not yet normal.
"It's hard to study and heal. However, learning to have fun in the midst of suffering seems to be a compulsory course for every thalassemia patient. I regarded my visit to Nanning for treatment as a vacation moment in a boring and endless experiment. ”
During that time, Liu Yuetong had to do reagent sales in addition to running the laboratory during the day, and he was always tired after work, because his body couldn't bear it, so he could only watch others work overtime during non-working hours to rush for performance. And due to the cost of time and money for treatment, Liu Yuetong basically cooks noodles and fried rice by himself every day, and will do a little better on weekends - make a soup.
Self under the stars
Outside of the material, the spirit is also monotonous. The experience of treating diseases since childhood made Liu Yuetong feel that she had dragged down her parents, and she was an outlier who would only bring trouble, and she was unwilling to have emotional entanglements with others. He put more energy into communicating with nature, he learned to make coffee, he fell in love with tea, he was introduced to photography for the first time, photographed the Milky Way, and picked up a science fiction magazine that he had loved since junior high school.
"Everyone has their own way of living, and living sick is also a way of life. Don't think about being like others, to reconcile with the disease by yourself, and find a path that suits you. He once thought that life would continue in such a low-energy state, and he didn't want to, and life was unsatisfactory nine times out of ten.
03
"Even if it's a discounted life, I want the whole world"
In 2022, Liu Yuetong was diagnosed with pulmonary hypertension in the hospital. "This disease, known as cancer of the cardiovascular system, is measured in terms of a 5-year survival rate, and I have fixed my life in 5 years. This year, the targeted drug of thalassemia was launched, and I tried it for the first time, and it was effective, but the improvement of blood picture still did not meet expectations. ”
Illustration of thalassemia gene therapy
There aren't many options left, and the best one is gene therapy. In the news, the disease-causing gene replacement therapy represented by the American Blue Bird Company has been successful, and Zynteglo, which is worth $2.8 million, has been called "the most expensive drug in history".
Such a sky-high price has turned away ordinary patients like Liu Yuetong, but fortunately, many gene companies in China have also begun to deploy gene therapy and even started clinical trials. However, because it is a clinical trial, free of charge, and both the company and the hospital want to succeed, the individuals screened at the beginning are thalassemia patients who are young, recover quickly, have no complications, and have no spleen resection. Liu Yuetong was once again excluded.
In 2023, he participated in several online gene therapy summits, and saw patients who had undergone splenectomy surgery and were in their 20s, and he felt that he should still prepare according to the conditions of gene therapy.
In contact with more patients, Liu Yuetong also has a more systematic understanding of the current thalassemia treatment. At present, hematopoietic stem cell transplantation is the only clinical cure for thalassemia, but due to the limitations of low matching success rate and greater risk in adults than in children, regular blood transfusion and adequate iron removal are still the main methods for treating the disease.
Check the statistics of the results
Check the trend statistics of the results
According to the Economic Burden Report of Adult Patients with β-Thalassemia Major in China, the average annual treatment cost of patients with severe β-thalassemia weighing 60 kg is 96,000 yuan, including 16,000 yuan for blood transfusion and 81,000 yuan for iron removal.
With the improvement of the national medical insurance system, and the inclusion of Yunnan, Guangxi and other provinces with a high incidence of poverty in the scope of outpatient special chronic diseases and outpatient severe diseases, the treatment cost of thalassemia patients has dropped significantly. Taking deferasirox that Liu Yuetong has been taking for a long time as an example, from 2,800 a box to 550 after being included in the medical insurance, and now it can be reimbursed according to the proportion of 80%, he now needs more than 1,100 yuan for 10 boxes a month.
The state has solved the medicine, and the blood from the people is still a big problem. Many places in the country are facing different degrees of ischemia problems, and hemoglobin not less than 60g/L has become an unwritten helpless situation, including many large hospitals in Kunming. However, the Guidelines for the Diagnosis and Treatment of Thalassemia Major β issued by the Chinese Medical Association clearly regulate: hemoglobin of patients with thalassemia is less than 90g/blood transfusion should be initiated. Thalassemia patients have different physiques, hemoglobin below 80g/L will have obvious physical discomfort and the body will begin a large amount of ineffective hematopoiesis, below 60g/L will be greatly impaired.
For this reason, many thalassemia patients have become "vampires" in the eyes of healthy people, fortunately, Guangxi, Guizhou and other hospitals have established "thalassemia homes", where blood transfusions can be given to thalassemia patients, in the coordination of blood transfusion doctors and hematologists, thalassemia patients have obtained the blood resources they rely on for survival, and regular blood transfusion across regions is the daily life of many thalassemia patients.
"The place I go to most often is Nanning. Many hospitals in Kunming have blood donation certificates from relatives from a few years ago and do not use blood, so fewer people donate blood. In Nanning, as long as you have a blood donation certificate from your immediate family, you can have a blood transfusion, and you don't even need a blood donation certificate for thalassemia families. ”
Liu Yuetong understands that the difficulty of using blood is a long-term social problem, and he also understands that there are many people who need blood in addition to thalassemia patients, but the train tickets he has accumulated make him look forward to the day when he will no longer travel long distances.
In addition to traveling, he tried to experience the world as much as possible according to the "5-year survival rate" plan. "When I eat with my friends, I scare them because red meat is high in iron, and thalassemia people can't eat it. But I just like to eat good food! Sometimes, when the uric acid is high, I take two allopurinol pills and continue to eat. I think I'm already so miserable, I have to eat it quickly when I see something delicious. ”
Go out and shoot the starry sky
The cameras I bought in college now have more time to press the shutter. "Maybe it's because I haven't had good physical strength since I was a child, so I've always liked to look at the sky and see the universe quietly, I think the universe is very lonely, which is very similar to human beings. I want to record the changes and bits and pieces of my life in the process of slowly getting in touch. ”
He went to Shangri-La and stayed up all night leaning on an oxygen cylinder to record the changes in the star tracks; In his hometown of Lincang, he photographed the beautiful countryside after the liberation of poverty. His photograph of No Man's Land has received many likes on social media, and his life photo album for his lover has become a favorite gift for the other party.
Liu Yuetong in the video shooting
He has participated in offline workshop classes for weddings and wedding dresses, learned about non-portrait commercial photography that is realized, and he knows that although he loves it, he must not be able to withstand the high-intensity and continuous shooting tasks with his body, and he can only take the photography he loves as a hobby rather than a career, and he has always liked science fiction and music. He doesn't like many things, but he has always loved it, a long-term love.
He liked the paintings of Monet and Van Gogh and felt that they always brought him inspiration; He likes Jiang Bo's science fiction novel "Heart of the Galaxy", which he thinks can bring him a worldview that transcends the mortal; He even spent more than 2,000 yuan to buy a Sony music player that he used to think was an "IQ tax" in order to hear what "lossless" is.
"I'm interested in everything that can heal my life. However, my energy is limited, so I can only stick to one or two things. Being able to feel these beautiful things makes me feel that life is very meaningful. ”
Photographs taken while in the hospital
The beauty of fate lies in its twists and turns.
In October 2023, Liu Yuetong went to Yulin, Guangxi to participate in a thalassemia activity, and met Dr. Liu Rongrong from the First Affiliated Hospital of Guangxi Medical University at the scene. "From 13 to 23 years, I lived to be 33 years old in 10 years, and Dr. Liu also became the director, we talked a lot, and finally talked about gene therapy, Nanning once again gave me hope for life."
Dr. Liu asked Liu Yuetong to go to Nanning to see if there was no opportunity for gene therapy. On the third day, he went to a place he was familiar with 10 years ago, and after reading various reports, Director Lai asked him to prepare according to the conditions of gene therapy, that is, to keep hemoglobin at least 90. If the conditions are ripe, the surgery can be performed as soon as mid-2024.
Liu Yuetong wrote in the text: "After returning from Nanning, I had another fever and lung infection, and I didn't get well after taking medicine for 4 days, so I had to go to the hospital. The latest haemoglobin is 75, and when I am discharged from the hospital tomorrow, I will be ready to go to other provinces for blood transfusions. This is the living situation of thalassemia patients, either in the treatment of the disease, or on the way to the treatment. But I'm not going to give up. ”
Liu Yuetong who lives casually
The wood-colored furniture and decorations connect the entire interior space, and Liu Yuetong's music player is Jay Chou's "The Last Battle". Liu Yuetong's voice came from the slightest aroma of coffee, and he said: In the past 30 years, I have been living a life that has been deprived of half of my physical strength and half of my power. Perhaps, I have a discounted life, but I also have a world that is not discounted. Thalassemia has made me more focused, and to experience the life of this world with the disease is my life.
Produced by Yunji Youth Media Studio
Author: Wu Peizhao