Befriend butterflies and be reborn

Author: Wang Xiuli Shengjing Hospital Affiliated to China Medical University

Zeng Yue Shengjing Hospital Affiliated to China Medical University

Reviewer: Du Yue, Chief Physician, Shengjing Hospital Affiliated to China Medical University

Have you heard of systemic lupus erythematosus (SLE)? It is a chronic autoimmune disease, originally named because the patient's skin looks like it has been bitten by a wolf. It can affect organs and systems throughout the body. The condition varies from person to person, and severe cases can be life-threatening. The intractability and heterogeneity of this disease also determine that the treatment of SLE inevitably faces multiple difficulties and challenges. According to statistics, the number of patients in mainland China is nearly 1 million. Lupus is a very unfamiliar and even a little scary disease for ordinary people. Parents of children with lupus are full of fear of the disease and worries about the future of their children. This article invites you to clear the fog of lupus and introduce all aspects of childhood lupus. I hope to help parents and friends solve their problems, let more people understand lupus, and stand with more lupus patients!

1. What is systemic lupus erythematosus?

Systemic lupus erythematosus is a systemic autoimmune disease, which means that the immune system is at odds with itself and produces autoantibodies that damage itself. It can damage various organs of the body, including the skin, muscles, joints, eyes, kidneys, nervous system, digestive system, respiratory system, and blood system. It is more common in adolescents and girls. Neonatal lupus refers to the mother suffering from lupus erythematosus. The autoantibodies in the pregnant mother's blood enter the fetus's blood through the placenta, causing the newborn to have lupus at birth.

2. Causes

This is the most concerning issue for parents at the beginning of the disease. In fact, most diseases are not caused by a single factor, but by both internal and external factors. The internal factor is genetic genes, and the external factor is ultraviolet damage to the skin, infection, estrogen, drugs, chemical reagents, etc. The cause of neonatal lupus is the damage to the newborn's body by the mother's own antibodies.

3. How to discover?

In addition to the butterfly rash on the face, lupus in children can also present with a variety of other symptoms: unexplained fever, fatigue, weight loss, joint pain, purpura, edema, hematuria, proteinuria, vomiting, abdominal pain, epilepsy, abnormal vision, personality changes, intellectual decline, etc. Due to the variety of symptoms, it is easy to miss or misdiagnose, so you should seek help from the pediatric rheumatology and immunology department. Neonatal lupus is relatively easy to detect. When the newborn develops characteristic annular erythema, blisters, and scales after birth, it indicates this disease. In addition, because the mother has lupus, even if the newborn has no special symptoms, the mother will prompt the doctor to do the corresponding tests on the newborn.

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4. Treatment

The treatment of lupus in children is a long-term or even lifelong process, and parents need to be prepared for a protracted war psychologically and financially. Treatment drugs include hydroxychloroquine, hormones, cyclophosphamide, mycophenolate mofetil, tacrolimus, cyclosporine, etc. In recent years, the application of biological agents such as belimumab has brought good news to more children with SLE, but drugs are double-edged swords. These drugs have their own side effects. You must follow the doctor's instructions of the pediatric rheumatologist when taking them. You must not reduce or stop the medication without authorization, because reducing or stopping the medication without authorization may cause serious adverse reactions or recurrence of the disease. The doctor will inform you clearly about the relevant side effects, and parents can pay attention to them. It is a consensus among rheumatologists that traditional Chinese medicine cannot replace Western medicine as the main treatment method. For neonatal lupus, symptomatic treatment is the main treatment. If there is severe atrioventricular block, a pacemaker needs to be installed.

5. Life

In terms of lifestyle and diet, avoid foods that can increase the photosensitivity of the skin, such as celery, spinach, mushrooms, lemons, etc.; children who are taking medium to high doses of hormone treatment often have a strong increase in appetite (one of the side effects of hormones), so it is necessary to properly control calorie intake and weight. Skin damage caused by strong ultraviolet rays can activate the body's immune system and cause lupus disease activity, so try to protect against the sun. Sunscreen and sun-proof clothing are necessary daily necessities; in the north, you should prevent freezing in winter, and frostbite can also cause lupus disease activity. During the menarche stage of girls, lupus disease activity may be caused by the increase in estrogen. Parents need to observe carefully and increase the number of follow-up visits. An optimistic and positive attitude is beneficial to the recovery of lupus. Parents should strive to overcome their own anxiety, create a sunny and positive atmosphere for their children, build confidence in defeating lupus, and let the children return to normal study and life.

6. Looking to the future

In the future, with the development of society and medical technology, more and more new drugs being developed, and the improvement of parents' awareness, we have reason to believe that with the joint efforts of doctors and parents, our children with lupus will definitely have a bright and beautiful future.