"If one day, I can really be cured, I will be as brave and successful as many other young men." Liu Ling (pseudonym), 29, has been suffering from psoriasis for eight years. In fact, after sharing his beautiful thoughts with the reporter of Health Times, he had thought of suicide many times.

There are many patients like Liu Ling whose lives have just begun, but they are defined as "psoriasis". A survey on the disease burden and quality of life of patients with psoriasis shows that 89% of patients with psoriasis in China feel mental pressure, 34% of patients with psoriasis have suicidal tendencies because of illness, and 4.6% of patients have committed suicide.

"I didn't care when I was sick. I didn't expect my condition to get worse."

Liu ling, who lives in Lushi County, Sanmenxia City, Henan Province, is a patient with psoriatic arthritis. No one would have thought that Liu Ling, who can't walk normally now, has to walk with crutches every time he goes to the hospital. Once, he studied in a professional technical school in Henan and got excellent grades.

"I am studying in an expert technical school in Henan. When 20 12 graduated, silvery scales suddenly grew on his head, accompanied by scab spots and itching. At that time, I didn't care too much. I thought I was allergic to any food and didn't tell my family. " Liu Ling told the story.

"It was not until the end of 20 12 that I suddenly felt that this silvery white scale covered my head and back, accompanied by pain in the calcaneal joint, so I told my family." In this way, Liu Ling went from his county to the city, and then to Zhengzhou, Xi, Beijing and Shanghai. Liu Ling was diagnosed with psoriatic arthritis in Beijing.

China Psoriasis Diagnosis and Treatment Guide points out that psoriasis is not only a skin disease, but also a systemic disease. Especially moderate and severe patients can suffer from systemic diseases such as hyperlipidemia, diabetes, metabolic syndrome, Crohn's disease and atherosclerotic cardiovascular disease.

Psoriasis, commonly known as psoriasis, is a common chronic skin disease. "The first statistic of psoriasis prevalence was in 1980, when the prevalence was 0. 123%. Statistics in 2008 showed that the prevalence rate reached 0.47%, showing an upward trend. At present, the number of cases in China should be more than 7 million. " Wei Xu, director of dermatology department of Beijing Friendship Hospital affiliated to Capital Medical University, told Health Times reporter.

According to the clinical characteristics of psoriasis, it can be generally divided into common type, pustule type, arthropathy type and erythroderma type. The common manifestation is red or brown maculopapules or plaques on the patient's body, and the surface is covered with silvery white scales with clear boundaries. Most of them occur in scalp and limbs, and some patients involve joints, which are joint diseases; A small number of severe patients have pustular lesions or systemic redness and desquamation, leading to erythroderma.

Psoriasis has a genetic tendency, and people from infants to over 90 years old may get psoriasis, but the highest incidence rate is among young people aged 20-50. Director Wei Xu introduced that psoriasis is a chronic and recurrent disease, and there are many reasons for its recurrence. In addition to seasonal factors, overwork, irregular daily eating and living habits, endocrine disorders, decreased immune function, drug abuse, infection, trauma and so on all promote the occurrence and development of psoriasis.

"Since I was diagnosed, the whole family has fallen into despair. Even so, my relatives have not given up my treatment, the city has gone, and the hospital has seen it. " Liu Ling told the Health Times reporter.

"I have had the idea of whispering many times."

"At first, I usually relied on hormones to maintain it, although I knew that hormones could not cure my illness, but only temporarily relieved the pain."

Liu Ling told reporters, "Until 20 15 years, I found that my limbs were severely deformed, which led to disability and I began to be unable to take care of myself. I feel that the sky is falling down, I can't sleep every night because of physical pain, and I also suffer from severe depression. "

"In the face of more and more serious physical diseases, I began to quarrel with my family and make them angry. The reason is that I'm afraid they don't care about me and give up on me. I even set fire to my kitchen, and I have a lot of ideas about not wanting to live. " Liu Ling told reporters.

Director Wei Xu said that psoriasis, as a skin disease, is a very intuitive disease. Patients can see the focus every day, which will bring strong visual impact. Many patients have the tendency of depression and suicide, which has a great impact on the quality of life of patients.

20 19 China Knowledge Network released a survey on disease burden and quality of life of patients with psoriasis. According to the survey, 89% of psoriasis patients in China feel mental pressure, 34% of psoriasis patients have suicidal thoughts because of illness, and 4.6% of them have committed suicide.

From 2065438 to 2008, Peking University International Medical Management Research Center released the Report on Psoriasis Disease Burden and Quality of Life in China, which showed that 37% of patients were unemployed due to psoriasis, and the unemployment rate of patients with moderate and severe psoriasis was as high as 48%.

Similar to Liu Ling, Wang Zi (pseudonym), who lives in Yakeshi City, Hulunbeier City, Inner Mongolia Autonomous Region, has been suffering from psoriasis for nearly ten years. "It is because of this disease that my husband left me after I was ill for two years. I have been divorced for eight years now, and now I live on subsistence allowances. "

"I belong to erythrodermic psoriasis, and now I am treated with Avaya, but this medicine has great side effects. Now my whole body aches, and it is difficult to walk. In the past two years, I have been lying in bed for half a year, and my mother in her seventies has been taking care of herself. " Wang Zi said that last year, my mother got herpes because she took care of me. At that time, I wanted to die, and I didn't want my elderly mother to work like me again. Now I am trying to live every day.

"Since I got this disease, I have almost closed myself up and rarely contacted people. I am afraid to see the questioning eyes of others. I am afraid that others will ask me what is wrong. " Wang Zi shared her experience. "Once I met an acquaintance and asked me if the disease was contagious in front of so many people. I felt very embarrassed at the time. "

The dilemma of drug abuse needs to be solved urgently: imagine normal people living well

Liu Ling told the Health Times reporter that he later got to know many patients like him and learned a lot about common sense and treatment of psoriasis. At present, there are some effective treatments, such as biological drugs, and you can keep in good condition by insisting on using your body.

"Everyone says that biological agents can be better controlled, but it's too far away for me. The intensive period needs tens of thousands of dollars, and it needs two or three thousand per month. " Wang Zi said. "When I am very ill, my whole body will be 100% damaged and swollen, so I can't walk on the ground. Every day my mother takes me to bed to eat. "

As a targeted therapy for psoriasis, biological agents are mainly aimed at moderate and severe patients. "The therapeutic effect of biological agents is very impressive. Now two kinds of biological agents have been included in the medical insurance catalogue. According to Beijing's medical insurance policy, they can be reimbursed at a fixed rate, which greatly reduces the treatment pressure of psoriasis patients. " Director Wei Xu said that even if there is resistance to the biological agents used, there are many kinds of biological agents now, which can be treated with another biological agent.

In recent years, the extensive research and clinical application of biological agents are of great help to patients with psoriasis. In 2020, the British Association of Dermatologists recommended that patients with psoriasis have a great impact on their physiological, psychological or social functions (such as clinically related depressive symptoms), or patients with severe local psoriasis with obvious dysfunction and/or high pain (such as intractable parts: nails, face, scalp, palms and soles, flexion and genitalia) should be treated with biological agents.

"Knowledge of China Psoriasis Biotherapy Experts (20 19)" also pointed out that when psoriasis has a significant impact on the quality of life of patients, biotherapy can be considered.

However, for most patients, the cost of biological treatment is still quite expensive. 20 13, the state drug administration and China approved the first imported psoriasis biological preparation to be listed, but the price was extremely high, each one was 6600 yuan, and the drug was given according to the weight. Until 20 18, the state administration of pharmaceutical products and the health and health commission issued the "announcement on optimizing the examination and approval of drug registration", which greatly simplified the examination and approval procedures for new drugs listed overseas. A variety of psoriasis biological agents have accelerated the pace of entering China.

Director Wei Xu said that psoriasis is not only a skin disease, but also a systemic disease. At present, the reported cases of psoriasis are mainly manifested in psoriasis such as eye disease, hypertension, arthritis, cardiovascular disease, metabolic syndrome and inflammatory bowel disease. If joints are involved, it is recommended to treat them with biological agents as soon as possible.

"In addition to actively cooperating with doctors in regular hospitals, patients with psoriasis should also pay attention to avoiding smoking and alcohol, eating lightly, avoiding colds, tonsillitis and pharyngitis as much as possible, avoiding excessive fatigue, developing good living habits and eating more foods rich in vitamins." Director Wei Xu said.

"In addition to some care in life, we should pay more attention to patients' mental health and do basic disease education for patients, so that they can clearly understand that although the disease cannot be cured, it is not contagious, and patients with mild symptoms have little impact on their lives." Director Wei Xu said.

"Biological agents have been proved by medical science to be a breakthrough treatment for psoriasis, but many patients can't reach it because of its high price. So far, although some psoriasis drugs have entered medical insurance, many areas still cannot enjoy medical insurance reimbursement. " Liu Ling told reporters.

"Immune chronic skin diseases, such as psoriasis, need lifelong medication in the field of skin diseases, which deserves great attention from the state and society." During the two sessions in 2020, Lu Chuanjian, member of the Chinese People's Political Consultative Conference, deputy chairman of Guangdong Provincial Committee of NLD and vice president of Guangdong Provincial Hospital of Traditional Chinese Medicine, said that the long-term and repeated delay of psoriasis not only affected the quality of life of patients, but also troubled patients with illness, social discrimination, psychological stress and high medical expenses.

Lu Chuanjian suggested that in addition to raising public awareness of psoriasis and reducing discrimination against psoriasis patients, it is more important to formulate and introduce relevant medical insurance policies to include psoriasis in the scope of chronic diseases or special diseases in outpatient clinics. In addition, we should speed up the entry of biological agents into the medical insurance negotiation process and establish a reasonable payment model shared by patients and national medical insurance to meet the needs of patients.

"If one day, I can really be cured, I will be as brave and successful as many other young men." Liu Ling is expecting that the best time of my life has just begun. When will my skin be reborn?