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Chongqing, December 18 (Reporter Xiao Qinghua, Shi Xi, Hu Shuxia, Xiang Rong) "I just got the 'beauty disease' ......" Ao Xue, a 19-year-old girl who was just diagnosed this year, soared by more than 30 pounds because of taking hormone drugs. Feng Wu, who has been diagnosed for 18 years, claims to be a senior "old wolf". After going through many hardships in life and "taking risks" to give birth to a child, she is still alive and strong.
On December 12, the news of actor Zhou Haimei's death due to illness pushed systemic lupus erythematosus (SLE) to the hot search, and also made this group of patients who originally lived quietly receive more "attention".
According to statistics, there are more than one million lupus erythematosus patients in China. There is no exact epidemiological data on the incidence in Chongqing, which is comparable to the domestic incidence rate, with about 30,000 patients.
With New Year's Day approaching, Ao Xue has rented a house near Chongqing University Town to prepare for Xi, and her classmates are about to return to school after a year off school due to lupus erythematosus. Feng Wu insisted on returning to Dadukou on weekends, where dozens of children come for a painting class every week.
For them, the future is promising.
"Risky" birth
The "old wolf" has to live harder
After graduating from university in 2001, Feng Wu worked in graphic design and often stayed up late.
In 2003, she went to Shanghai with her boyfriend. The work is hard, but the income is good. A year later, due to edema of both feet, he was diagnosed with lupus nephritis in Shanghai Ruijin Hospital.
During the early treatment, the monthly cost was as high as 8,000 yuan, and Feng Wu's monthly income at that time was only 5,000 yuan. "The doctor said that the illness was too tiring and advised him not to go to work. ”
After returning to Chongqing in 2008, Feng Wu, who was in stable condition, went to work in an art agency. It was easy to have 2 classes a day in the afternoon.
Due to the need for regular review, Feng Wu registered an expert number in Southwest Hospital. "After the age of 30, I still want a baby. "Feng Wu previously got the information that the chance of pregnancy recurrence is higher. In the QQ group she joined, there was also bad news that patients had to have miscarriages due to recurrence of pregnancy.
But the experts gave her great encouragement and confidence, and she decided to "take the risk" to have a baby. After surviving all kinds of discomforts in the early stages of pregnancy, Feng Wu could no longer bear her husband's "betrayal", "He felt that it was too risky, and if he gave birth to a daughter, he was worried that it would be inherited." So, after more than 3 months of pregnancy, Feng Wu resolutely divorced her husband and insisted on giving birth to a child.
The baby was born 20 days prematurely, and was not carried out of the nursery until 3 weeks later. "After the water broke, the doctor did not dare to have a cesarean section, and he had to wait for my platelet index to be normal. Speaking of the situation at that time, Feng Wu had palpitations.
In the 18 years since her diagnosis, Feng Wu's treatment cost has exceeded 500,000 yuan, but because she followed the doctor's advice and adjusted her mentality, she didn't work hard or stay up late...... She has barely relapsed.
Feng Wu usually prefers to stay alone (photo by Chen Zhilie)
Today, she cooks breakfast for her son every day and takes him to school. On weekends, she travels from Shapingba to Dadukou, where more than 30 children are waiting for her painting lessons. She wears a mask when she goes out, does not bask in the sun, has a regular schedule and rest, and eats a light diet.
Feng Wu occasionally has some pain in her body, especially in her ears. Winter is the season she doesn't like, and the "Raynaud" phenomenon (vasculitis) in her right hand is obvious, numb, and needs to be kept warm to alleviate. But many times she lives like a normal person, "There are many 'old wolves' like me who have given birth to babies." With a baby, you have to live harder. ”
Suffering from "beauty disease"
Live like a "beauty"
Ao Xue's newly found Xi unit is not far from the school, and she rented a room upstairs from the unit. It is a telemarketing company, so you don't have to go out, and you can work from 10 a.m. to 5 p.m., which is relatively relaxed.
Back 9 months ago, Ao Xue was not so easy about her Xi planning.
In March of this year, Aoxue's eyes were badly swollen. She went to the ophthalmologist and then to the nephrology department for a puncture, and was diagnosed with kidney disease. After being discharged from the hospital in April, he developed disc-shaped spots all over his body. It is considered to be urticaria, and the markings fade after the infusion.
On September 4, she lost consciousness at school and was taken to the hospital by ambulance. On September 18, he was diagnosed with severe lupus erythematosus and was in the active stage.
On September 30, she was again admitted to the ICU for an emergency blood transfusion. Until he was discharged from the hospital on November 2.
Aoxue's hometown is in rural Wuxi, Chongqing. Her father died when she was just over 1 year old, and her sister was not yet a month old. A few months later, the mother ran away from home. In the second year of junior high school, her grandmother died, and Aoxue gradually became the backbone of the family.
The father's pension has always supported the Aoxue sisters to study, and the sisters have been admitted to universities in Chongqing one after another. After graduating successfully, working to earn money, supporting her sister to study and supporting her grandfather, Aoxue has hope.
After being hospitalized again in October, teachers and classmates at Aoxue School donated money for her and launched an online fundraiser. My sister has a lot of courses, so I come to see Aoxue once a month or so. "She has good grades, and she is a student union cadre, and she has to work part-time for all scholarships. Speaking of her sister, Aoxue's face was full of pride. "I often called my grandfather and told him about this disease, but he didn't understand it very well. ”
Ao Xue tried her best to "wrap" herself up (photo by Chen Zhilie from CCTV)
After this change, Aoxue's weight surged by more than 30 pounds, and her face became round. Although the condition is well controlled, there is still swelling and pain, and it is difficult to clot after ear bleeding because of the low platelets.
While she was in the hospital, the counselor told her that her classmates, who had taken a leave of absence due to illness a year ago, were going back to school. Only then did Ao Xue know that her classmate also suffered from lupus erythematosus. The two who have the same illness have become friends.
"We all say that we have a 'beauty disease'!" Ao Xue blinked and said mischievously, since it is a "beauty disease", then we have to live a "beauty-like". Although I know that this disease cannot be cured by long-term medication, and I have to pay attention to avoiding light in my life, I have to pay attention to many inconveniences such as avoiding light, but Aoxue is ready to "dance with wolves".
Diagnostic criteria have improved
Chen Guotao, director of the Department of Nephrology, Rheumatology and Immunology at Chongqing Hygeia Hospital, is the attending physician of Ao Xue, and although lupus erythematosus is a common disease, Ao Xue's condition is atypical. "It is relatively rare, mainly with hematologic damage, and the immune indicators are mostly negative. Chen Guotao said that this is also the reason why Aoxue has not been diagnosed for a long time.
According to the original diagnostic indicators of lupus erythematosus, 13 indicators ((1) butterfly erythema or discoid erythema (2) photosensitivity (3) oral ulcer (4) non-deformity arthritis or arthralgia (5) serositis, pleurisy or pericarditis (6) nephritis proteinuria or casts urine or hematuria (7) nervous system injury, convulsions or psychiatric symptoms (8) abnormal blood count, leukocytes less than 4x10^9/L or platelets less than 80x10^9/L or hemolytic anemia (9) lupus cells or anti-dsDNA antibody positive (10) anti-Sm antibody positive? A positive lupus band test with less than normal complement) can be diagnosed if four criteria are met.
However, according to the 2020 Guidelines for the Diagnosis and Treatment of Systemic Lupus Erythematosus in China, the current standards have been further optimized and validated, so that the sensitivity and specificity of the diagnosis have been improved. The SLE classification criteria require at least one clinical classification criterion and a total score of ≥ 10 to be diagnostic. According to the new diagnosis and treatment guidelines, she (Aoxue) has a score of 17. ”
"2020 Guidelines for the Diagnosis and Treatment of Systemic Lupus Erythematosus in China" (Photo provided by the interviewee)
Of the more than 200 lupus patients in Chen's case, who ranged in age from 15 to 45, there was only one death. "Severe cases were discontinued, and they were detected late. ”
His youngest patient was only 17 years old, and he was admitted to the civil service at the age of 26.
Lupus can "do" anything
On December 14, Li Chengyin, deputy chief physician of the Rheumatology and Immunology Department of Chongqing Hospital of Traditional Chinese Medicine, received a total of 65 patients that day, including 9 patients with lupus erythematosus. "Seven people were revisited, and two were diagnosed on the same day. In the days since, the percentage of patients with lupus erythematosus has remained high. "Usually there are only 3 or 4 people. In eight years, Lee has treated more than 300 patients.
In Li Chengyin's view, the statement that lupus erythematosus is an "immortal cancer" has long been not mentioned in the industry. "This kind of formulation can cause great psychological pressure on patients. With the current level of medical care, the mortality rate is extremely low. However, the extremely low mortality rate mentioned by Li Chengyin is based on systematic treatment and standardized drug use.
In 2018, a 41-year-old female patient died after 2 weeks of resuscitation with prolapse (detachment) of both feet.
Li Chengyin said that the deaths were all related to non-compliance with doctors' instructions and irregular medication. Some patients become paranoid after the disease, resulting in low compliance and low acceptance of treatment options, and then refusal to treatment.
"Lupus can do anything......" is a common proverb in the medical community. Li explained that lupus erythematosus attacks the nerves in the patient's brain, causing some rare symptoms.
A 14-year-old Sichuan girl who was treated last year showed incoherent speech, dancing with her hands, rubbing empty threads, and unable to stop. "It's a rare complication of 'chorea'. "After the treatment of Li Chengyin's team, the condition was controlled. They will discuss it as a rare complication case and plan to discuss it with their peers at next year's National Rheumatology and Immunology Annual Conference.
Younger patients can be emotionally devastated in addition to their bodies. Not long ago, a girl was crying in the hospital room, and it turned out that she was cruelly abandoned by her boyfriend. "Illness is really the litmus test. ”
But there are exceptions. Li Chengyin said that when he was Xi at a hospital in Nanjing, he and his classmates treated a girl with lupus erythematosus. "The girl is beautiful and very cooperative with the treatment. Later, I was chased by my classmates, got married, and had children. ”
There are about 30,000 patients in Chongqing
Professor Gao Lei, deputy director of the Hematology Medical Center of Xinqiao Hospital of the Army Medical University, introduced that lupus erythematosus is an immune response caused by excessive estrogen in the body, and the incidence rate in women is higher than that in men, especially women of childbearing age. The average age of onset of lupus erythematosus in China is 30.7 years, and the male-to-female sex ratio is 1:12.
The incidence rate in China is about 70-75 per 100,000 people, and more than one million patients in the country. There is no definite epidemiological data on the incidence of SLE in Chongqing, and it is estimated that the incidence is comparable to that in China. Based on the population of 30 million in Chongqing, there are currently about 30,000 patients.
The treatment of lupus erythematosus is based on hormones, and can be combined with cyclophosphamide, chlorambucil, azathioprine, cyclosporine A, methotrexate tablets, or combined with traditional Chinese medicine. Care should be taken during treatment to remove triggers (infections, endocrine disorders, ultraviolet radiation, exposure to chemicals), self-protection, and dietary contraindications.
The survival time of patients depends on the organs involved and the degree of involvement, but most patients can survive for more than 10 years after prompt and reasonable treatment, and most of the causes of death are infection, followed by renal failure, central nervous system lesions, and heart failure. (At the request of the interviewee, Ao Xue and Feng Wu are pseudonyms in the article)
Non-governmental organizations are in action
Call for attention to 60,000 children
2023 is the sixth year that 35-year-old Ling Huiji (screen name: Zhuo Le) has been with the lupus erythematosus circle. Since 2018, she has devoted herself to the "SLE Grocery Store" public welfare project, and has occupied all of her needs.
In 2020, she established the company as a project supported by the Shanghai University Student Entrepreneurship Foundation, received key support from Shanghai University of Engineering Science, and obtained bank loans from the foundation, plus entrepreneurship subsidies in Tianshan Road Street, Changning District, Shanghai, shares from teachers and friends, and sponsorship from enterprises to maintain operations.
Before the 2022 World Lupus Day, Zhuole and her team worked with various organizations to complete the "2022 National Lupus Patient Needs White Paper". The subjects of this study were mainly women aged 26-35, mainly in the stable stage. The longest period of diagnosed disease is 8-15 years, the shortest is 1 month, and the longest is 33 years. The valid questionnaire scored 1886 points (including 1694 for adults and 192 for children), covering Jiangsu, Shanghai, Guangdong, Zhejiang, Hainan, Anhui, Hebei, Shandong, Henan, Sichuan and other provinces and cities.
At this year's SLE National Patient Conference, "SLE Grocery Store" joined hands with Shanghai Puji, Jiangsu Fenxiang, Anhui Butterfly Feifei and Zhonghe Medical to establish the Yangtze River Delta Rheumatology Patient Service Alliance. At present, it can cover more than 60,000 SLE patients.
"Our original intention in doing this is to connect as many lupus patients as possible and solve their worries. Let's help more patients together and avoid detours. This is how we sum up their corporate purpose.
A Guangdong girl was diagnosed with SLE as a teenager. Her parents searched for remedies and listened to rumors that they couldn't eat meat. So throughout the girl's adolescence, she was given cabbage. When she became an adult, she joined the patient's WeChat group and found that patients of her age were eating meat and other proteins, and then she woke up. Another patient from Hebei Province used health care products indiscriminately after stopping the drug, which led to a sharp decline in kidney function and eventually kidney failure.
Speaking of these cases, Zhuo Le is deeply saddened, "We have always called for a regular hospital for long-term treatment and re-examination once diagnosed. ”
A few days ago, a live broadcast was launched on the video account of "SLE Anxiety Relief Grocery Store", and more than a dozen lupus patients reported online that the recent reports were unfriendly to patients. Originally, everyone's life was stable, but suddenly the people around them began to pay attention to lupus erythematosus, and they all had a more compassionate attitude, which was very sad for them.
Zhuo Le hopes that everyone will not look at lupus erythematosus with an alternative eye, and do not pity "butterfly friends" too much. They have their own lives, they have their own circles, they are ordinary people.
At the same time, SLE Grocery Store has also called public attention to children's SLE, with more than 60,000 SLE children in China. When a child becomes ill, the disease is more difficult to stabilize than an adult, and the disease lasts longer.
Although she has been involved in SLE charity for many years, her friends who know Zhuole know that she is not a patient, so she often jokes with some good "butterfly friends": "I have a mental illness, and this disease happens to be lupus erythematosus." I hope that everyone's life can have a unique shining point, illuminating themselves and others."
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