From the age of 25, I haven't worn the skirt again

Life normally, free dressing, they have done everything all before

How could Manwen not think that the suspected eyelashitis at the age of five would be diagnosed with psoriasis one year later.

Manwen was born in a small mountain village at the foot of Huangshan, Anhui. He is 32 years old and has suffered from psoriasis for 27 years. He can be called a "old skin".

"At that time, the eyelashes were red and red. In the morning, there were always a thin layer of skin, and it could be torn off with a torn. The ophthalmologist in the county hospital said it was eyelashes." There were many red spots on Manwen's head, and the red dots were white skin. This is too unusual. Parents took Manwen to the dermatology department of the hospital. The result given by the doctor was psoriasis.

It also has a well -known name "psoriasis". This disease is really stubborn and difficult to cure like a small ads sticking to the electric pole. According to data, there are currently over 6.5 million 1 patient with psoriasis is about 0.47% ^{2, approximately 57.3% 3 patients are medium weight. Many of them are like Manwen, "the ancestors have never heard of this disease."}

(The following content contains the real photos of patients with psoriasis, which may cause discomfort)

In order to look like a "normal person"

I have tried more outrageous prescriptions

"My skin lesions are not the same as others. It grows on the face and heads on my head. There are a lot of spots. Some places are connected with a large piece of skin lesions and red color." Manwen Said, at that time, the classmates looked at her like watching a monster every day, and they would be pointed at the road. I felt that the whole life was dark. So she studied desperately because she found that only the grades were good, and the children would be willing to play with her.

Treatment of psoriasis for Manwen has become a big stone that presses on the heart of the family. In her memory, her parents ran all day all day long. As long as I heard that the treatment was good, she would take her to it, no matter how far it was, how expensive the medicine was. The mother began to be silent, and often hugged her silently, bathing her, rubbing her medicine, and cooking.

Perhaps the parents felt that the parents were too hard work, so that Manwen thought that the death of his parents had a lot to do with himself. She can't forget it. At the age of 16, her mother had been pulling her hand before his death and said "I'm sorry, I didn't optimize your illness." Five years ago, Manwen's father died.

"Don't say too much, the money in a house must be spent. If it wasn't for this disease, the business at home would not be deserted, and it would not be so miserable." Manwen said.

But in fact, they didn't know how to treat it at that time, and even the doctors at the time could not give the answer. For a long time, she and her family were blindly hitting the wall. She has tried the most outrageous prescription, so far she still thinks about it.

Paquan skin lesions on Manwen's legs

"That ointment is a snake that does not know what the mercury, sulfur, sulfur, and dry batteries are baked. Everything is foaming, mixed together, using liquor, and applying it on skin lesions. Bake with fire. "Manwen gritted his teeth for more than half a month, and he was baking in baking all over his body. He didn't dare to move in the night, but even so, the skin lesions were still old.

Before 2008, Manwen was in a serious situation of governance. Long -term irregular treatment and medication brought serious harm to her body and mind. Until 2008 and around 2009, when she was treated in Hangzhou, the doctor told her that the current psoriasis can only be controlled, exercise more, sweat more, and then cooperate with some internal and external medicines to relax her body and mind, maintain a happy mood every day. It will be better for the condition. From then on, Manwen became no longer attached, but the skin was okay for a few years.

In 2012, Manwen was pregnant. Due to the decline in immunity, a large area of ​​recurrence appeared. When she was seven months pregnant, the skin lesions had reached 80%, especially in the joints. It is easy to crack, pain in pain, sleep pain, and pain in her mood. But at that time, the medicine could not be used, and it could only relieve the dryness of the skin by taking a bath. After insisting on giving birth to the baby, Manwen returned to Hangzhou from his hometown and lived in the hospital for more than a month. The erythema and psorcinism on his body were controlled.

In a few years, Manwen's skin lesions were relatively stable at about 3%. However, psoriasis is still too stubborn. In 2020, the skin lesions on her body recurred to 10%, and external medicines were no longer effective.

However, after being wrapped in psorians, it is not only Manwen who repeatedly jumping between disappointment and hope.

In the rising period of career

Keep resignation, cure disease, and find a job

25 years old, from Shanghai, there is a good treatment work, and a boyfriend who talks about marriage. This should have sprinted with a good sprint for life. At first, Jingjing thought so, but after one year of psoriasis, it was gone. It was also since then that she never wore a skirt again. Jingjing clearly remembers that it was 2000. At first, she was just the scalp itchy. She used the removed shampoo without much effect. She went to the hospital near home. The doctor said that it was seborrheic dermatitis, which was equipped with a few bottles of hormone -containing medicine.

"After wiking for a while, it did improve. But three or four months later, suddenly one day broke out. When I woke up, I had a lot of bumps on my head. There were a lot of dandruff. I'm scared. "She went to a more famous skin disease hospital in Shanghai. The doctor told her" You are psoriasis, which is more troublesome and basically not good. "

Although I was in my heart, Jingjing was still lucky and almost traveled through all the three hospitals in Shanghai, but the answers to the answers were the same, and the medicines were similar.

"Take medicine and apply ointment, it feels a little bit, but two or three days later, another piece is up. A piece or two of the arms goes down, the legs come out again, the legs go down or two, and the back of the back. Come out, this one after another. "The state of good or bad, let Jingjing suffer from depression, couldn't sleep all day, and didn't go out. Occasionally, when there was no one on the road, no one went out.

Like Manwen, she also tried various methods, hormone -containing medicines, instruments with electric shocks, and a lot of medicines for bathing for bathing, and tried them one by one. During the time of medication, Jingjing's kidneys became not very good. After going to the hospital, I could check a lot, and they could not find out the problem, but once the medicine stopped, all the medical examination indicators returned to normal. Not only is the pain, but the rebound is also powerful. In the worst, the skin lesions on her body have reached about 90%, and there is almost no good skin in the whole body.

By 2002, the Internet had developed, and Jingjing began to communicate with patients around the country online. According to a silver friend, she went to a troop hospital in a small town in Hubei and was treated with a hot spring bath.

According to Jingjing description, this treatment method is to apply the whole body with a very oily pine paste, and then use toilet paper and gauze to wrap the whole person like mumiyi. Hot springs are so weekly. During the whole process, she kept shaving her head for medicine. When she was discharged from the hospital two months later, the dander and rash on her body were almost gone.

She was very happy and found a job after returning to Shanghai. But when she planned to work while letting her life return to the right track, psoriasis recurred after half a year. At the left and right time, the skin lesions have reached 40%and 50%.

The skin lesions of Jingjing are almost covered with the whole body

She asked the company for two months, and went to the same place for two months. In order not to delay work, 80%of this time returned to Shanghai. From that time, she had to go once a year, and she had to soak for two months each time. However, the second year, the company would not ask for leave.

"Resign and make hot springs. After returning, find a job after you come back. After finding a job, you can boil it first, and you can take a leave until you see if you can ask for leave. You can only resign." Jing's life has fallen into a cycle. This is very uncomfortable for her in her career.

The days when she couldn't soak hot springs, in order to continue to be like a "normal person", she would pack her own medicine. Before going to bed every night from Monday to Friday, apply medicine and packets, get up the next morning, disassemble and clean it. The days when there is no need to packet on Saturdays and Saturday, it is like a holiday for her.

Due to the plastic wrap, she will squeak when she goes to sleep at night. She spent a long time and learned to restrain her sleep as much as possible when she slept. The colleagues were willing to live with her with a business trip, saying that she was particularly quiet at night. But the sadness inside was only known to Jing Jing.

Patients with psoriasis ushered in "to net new life"

After receiving the treatment of biological preparations, Jingjing wears a long -lasting skirt. Now every year, I will go to the favorite seaside every year.

Recurrence has always been the most headache for patients with psoriasis. However, the traditional treatment method does not effectively alleviate the repeated and stubbornness of psoriasis. It is also because of this disease characteristics that many patients have acted in medical treatment, and their desire to heal is even more urgent.

Although psoriasis is dominated by skin lesions, it is actually "an immune media that can infringe the systemic and chronic inflammatory diseases of multi -system and ugly organs." Professor Sheng Yujun, the First Affiliated Hospital of Anhui Medical University, said that some patients will have joint diseases, combined with systemic diseases such as hypertension, cardiovascular vascular, and metabolic -related diseases such as hyperlipidemia, hyperuricemia, and hyperglycemia.

"In the past, conventional treatment, including external drugs, oral medicines, phototherapy, physical therapy, etc., the effect is effective, but it is difficult to achieve PASI 75 (that is, the psoriasis area and severity index alleviate 75%after treatment)." Sheng Yujun said.

In addition, the recurrence after stopping the drug is fast, and the long -term medication causes systemic side effects is also the disadvantage of traditional treatment. For example, traditional systems can use immunotherapy such as methotrexate and cyclosporine, but long -term use will affect the hematopoietic system, liver function, and renal function of patients with psoriasis. Fortunately, as the clinical application of biological agents is becoming widespread, the treatment of psoriasis has ushered in breakthrough progress.

"Biological preparations and traditional therapy are essentially different." In this regard, Sheng Yujun explains that "it can inhibit the skin, blood vessels, and joints, which can be inhibited by the whole person's source Bai Jiekin-17A biological preparation as an example. The inflammatory damage is equivalent to targeted therapy, fast results, more targeted, and safer. Many patients' skin lesions are like ebb. "

Sheng Yujun said, "As the treatment of biological preparations of psoriasis is successively included in medical insurance, the current treatment costs are generally declining in terms of treatment costs. Yuan. "This is undoubtedly good news for patients who need long -term treatment.

At the same time, he also emphasized that "it is necessary to exclude related clinical taboos, such as hepatitis B, hepatitis C, tuberculosis and other infectious diseases, as well as tumors and inflammatory bowel diseases in order to inject biological agents."

Manwen's contact with biological preparations is derived from a clinical trial. After the first time, most of the back on the back is good. After the second time, the skin lesion on the legs began to fade, four times, and the legs on the legs on the legs. Basically clear zero. At present, in order to consolidate the treatment effect, she insists on injecting two shots a month.

In her opinion, the treatment of injection is very convenient and does not affect her normal life, which makes her more energy to plan her future small days. "In the past, operating the health museum was related to the experience of my illness. Now I want to save a few years of money. When the child goes to junior high school, I will return to my hometown. go."

Jingjing tried to use biological preparation earlier than Manwen, and was the earliest participant in Shanghai's earliest biological agent clinical trials. Before the biological preparation was listed in China and was included in medical insurance, Jingjing began to treat at their own expense.

In the past, she had moved the idea of ​​"whether to marry a small town near the hospital for cure", but now she is like a "new life", not only put on her favorite skirt, but she can walk freely by the sea. It also ushered in a small peak, becoming the director of a small team of a dozen people, and the focus of life no longer has to deviate from the track because of treatment.

Biological preparations for psoriasis have brought great encouragement to doctors and patients. Because of this, communication and trust between experts and psoriasis patients, and patients with psoriasis are getting closer. On July 23, the first offline activity of "Healthy China-Patients with Psoriasis Patients to Jingsheng Newborn Public Welfare Bank" supported by Nuohua was held in Sanya, Hainan Sanya.

"Healthy China-Patients with Psoriasis to Jingxin Newborn Public Welfare" first offline activity, psoriasis patients took a group photo by the seaside

This is the first time Manwen has been in such a far door, and it is the first time that he has seen such a blue sea. Although she couldn't swim, she still took the swimming ring and did what she had dared not do for many years. Not only that, this event experience also gives Manwen a deeper understanding of the phrase "the world is a family". It is reported that the third phase of the "Zhijing Newborn" offline event has started registration.

From the perspective of doctors, Sheng Yujun felt "every patient is a lively story." Prior to before, the demands of each psoriasis patients may be ordinary that they just want to achieve freedom of dressing and accompany their children to fight a water battle, but they have to pay a lot of effort for this. With the improvement of the medical level, the quality of life of psoriasis patients is improving, and its new life is ushered in.

*The information involved in this article is for reference only. For specific diagnosis and treatment, please follow the opinions or guidance of doctors or other medical and health professionals.

(In the text, Mangwen and Jingjing are pseudonym, and some pictures are provided by the respondents)

references:

1. Ding Xiaolan, etc., survey of psoriasis epidemic in six provinces and cities in China, 2010, China Dermatology Magazine shows that the prevalence of psoriasis in my country is 0.47%, so as to calculate.

2. Ding Xiaolan, etc., survey of psoriasis epidemiological surveys in the six provinces and cities in China, 2010, China Dermatology Magazine

3. Kun Chen, et al. Oncotarget. 2017 Jul 11; 8 (28): 46381-46389.

Author: Liu Lei

Edit: Ma Min

Operation editor: Wang Lin

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