A woman with lupus erythematosus went to Switzerland for euthanasia! Doctor: This disease is terrible but curable

Recently, a Shanghai girl named Shabai, who suffered from "lupus erythematosus-induced renal failure", has attracted much attention. She announced on her account that she would be euthanized in Switzerland at 4 pm local time on October 24. It is understood that she should be the first Chinese mainlander to be publicly approved for euthanasia in Switzerland.

As of now, there is no update on Shabai's account, and his profile picture has turned black and white.

It is reported that Shabai, who is over 40 years old this year, was diagnosed with lupus at the age of 20. The disease can cause the body's immune system to attack itself. Lupus is not easy to cure and requires long-term treatment. Patients suffer for a long time and are called "immortal cancer" by the medical community.

Is systemic lupus erythematosus really that scary? What should you do if you have lupus? What attitude should you have towards this disease? In this regard, Dr. Li Chun from the Department of Rheumatology and Immunology at Peking University People's Hospital recorded his observations and understanding of the disease "systemic lupus erythematosus" in the hope of providing everyone with some correct understanding.

(The following is the original text of Dr. Li Chun, with some minor modifications)

Recently, the story of a brave Shanghai girl named Shabai has attracted everyone's attention. My doctor friends, non-doctor friends, and fellow patient friends have sent me WeChat messages. Some complained about the horror of the disease, and some worried about their future.

1. What exactly is systemic lupus erythematosus?

Systemic lupus erythematosus is an autoimmune disease that affects multiple systems throughout the body. It is more common in young women, with a female to male ratio of 9:1. B cells are hyperactive and produce a variety of autoantibodies, which are deposited in organs and lead to the occurrence and development of the disease. In layman's terms, systemic lupus erythematosus is not caused by low immunity, but by hyperactive immunity, which causes autoantibodies to damage organs.

Current treatments mainly include hormones, antimalarial drugs, immunosuppressants and biological agents. At the same time, in recent years, cell therapy including Car-T has also brought new hope for the treatment of SLE. The treatment of lupus erythematosus has gradually transitioned from hormone immunosuppressant-based treatment to less hormone or even no hormone treatment.

As a rheumatologist with nearly 20 years of medical experience, I have personally experienced the transformation of systemic erythema treatment.

When I was a resident in rheumatology, the only drugs we had for lupus were hormones, hydroxychloroquine, and cyclophosphamide. Gradually, new immunotherapies such as mycophenolate mofetil, azathioprine, cyclosporine, and tacrolimus were gradually used in clinical practice. Around 2020, new biological agents such as belimumab, tetasip, rituximab, and interleukin-2 also began to be gradually used in China. Moreover, our country's medical insurance can already cover most of the treatment drugs, and the medical burden of patients can be greatly reduced.

2. Lupus erythematosus can still lead a normal life if it is treated consistently

To be honest, I personally don't like systemic lupus erythematosus very much, because I found that this disease mainly affects young women, sometimes young and beautiful women, and more often excellent young and beautiful women. A study in my country showed that more than 60% of lupus patients have a college degree or above.

A few years ago, when I was taking care of patients in the ward, I often saw patients bringing their homework with them and doing it while receiving intravenous drips in the ward. Many young patients also shared with me that they were admitted to famous universities such as Tsinghua University and Peking University, or were studying for a master's degree, or were working in well-known companies in Beijing. I was sincerely happy for them all.

In recent years, after I shifted my focus to pregnancy with autoimmune diseases, I have been sharing more good news about my fellow patients getting married and having children. I remember attending many weddings of fellow patients. This also tells us that as long as lupus is treated properly, patients can get married and have children just like normal people.

3. For lupus erythematosus, it is important to take medication regularly!

A few days ago, I chatted with an excellent lupus patient in the outpatient clinic. After we got to know each other, I found that this highly educated woman who often gave lectures to others did not take her medicine properly, often missed doses or even did not take them at all .

Every profession has its own expertise. Although many patients have learned a lot about diseases from various channels, it may be one-sided. Therefore, we doctors often say half-jokingly, "On the contrary, those patients who don't know much about the disease and leave the treatment to the doctor have the best prognosis!" I hope everyone will leave the treatment of the disease to more professional doctors.

Many patients are reluctant to take medicine because they are worried about the side effects of the medicine. But if we put ourselves in their shoes, taking medicine is the doctor's way of helping you find a balance point for immunity, so that an overly strong immune system will not attack your organs and protect your body. In addition, many adverse reactions of drugs can be prevented or avoided. For example, glucocorticoids are what we often call hormones.

Many patients refuse to use hormones, mainly because the drug makes people fat. In fact, it is not simply the drugs that make people fat. Many times it is because the appetite becomes very good after taking the drugs, and people are always hungry and eat more, which makes them fat all of a sudden. And it is difficult to lose weight after reducing the amount of hormones. If you strictly control your diet, many people will not gain weight! Therefore, every time I prescribe hormones to patients, I will constantly remind them to control their diet! Therefore, many patients did not gain weight when using hormones.

Moreover, with the advancement of our medical technology, we will increasingly choose less hormone, or even no hormone treatment options. At present, although systemic lupus erythematosus, like chronic diseases such as hypertension and diabetes, cannot be cured, our understanding of the disease and the development of new drugs have never stopped. I believe that one day, we will be able to cure this disease.

4. How to prevent lupus erythematosus?

First of all, you can add immune system examination to the routine physical examination items to detect immune system disorders in advance and intervene to avoid the occurrence of lupus erythematosus. In fact, treatment under the guidance of a doctor and regular follow-up can help the disease reach a state of remission.

Please face lupus erythematosus with a positive and optimistic attitude. Leave the treatment of the disease to the doctor and give yourself a beautiful life!

I am very sorry for not making this article more academic. I just wanted to have a heart-to-heart talk with you all. I am also afraid that many incorrect perceptions about the disease on the Internet will mislead everyone and cause unnecessary panic!