What is Lupus?
Lupus is a systemic chronic autoimmune disease, affecting the skin, joints, blood system, kidneys and other organs. It manifests itself in different ways, and the severity of the disease varies from person to person.
Lupus is a relatively rare disease. It has a 1 in 5 incidence among 10,000 people. One-fifth of the people who suffer from lupus see it appear during childhood. In Israel, 10-15 children are diagnosed with lupus a year. It is extremely rare for the disease to appear before the age of 5. In Israel, 16% of children with Lupus were diagnosed before the age of 11.
Why is my child sick?
Medicine doesn’t have one answer for that question. There are a number of known risk factors and it is assumed that when the risk factors are present at the same time with a specific genetic make-up, the child develops the disease. It is rare for more than one child in the same family to be affected by the disease. There are also environmental factors which can influence the disease – hormones, sun exposure, viruses and stress.
In most cases, the disease is gradual and the symptoms include fever, and tiredness which are on and off for months and even years. Later, the child will exhibit other symptoms, due to the attack on the body’s organs: rashes, overreaction to sun exposure, ulcers in the mouth or nose, hair loss, inflammation of the joints and muscles. The involvement of the blood can manifest as anemia, low levels of platelets and white blood cells. Many of the internal organs are affected by lupus, but the most important ones are the nervous system and the kidneys. Symptoms include headaches, trouble concentrating, memory problems, mood swings, depression, behavioral problems and more. Kidney involvement is only noticeable with urine samples.
How is the disease diagnosed?
There is no single diagnostic test for the disease. The diagnosis is based on symptoms and tests and after ruling out other possible diseases. There are 11 lab tests whose results can point to lupus. Four conditions are needed in order to make a formal diagnosis.
Lab tests are important for diagnosing and tracking lupus patients. The disease is characterized with the existence of self-generated, autoimmune antibodies. ANA, antibodies in the nucleus, are found in the blood of almost all lupus patients. These antibodies are not specific to this disease and are actually found in about 5% of all healthy children. There is another antibody which is almost exclusive to lupus patients – anti-DNA, which attacks the DNA in the cells.
Coombs Test checks the IgG antibodies in the blood. There are a number of other antibodies that help doctors diagnose and track the lupus. A full blood count will point to anemia and low white cell count and low platelet count.
Periodical blood and urine tests are very important in order to monitor the disease and its progression. In addition to blood and urine tests, there are a number of other tests that can be done, such as biopsies. A biopsy of the kidney, for example, will show the extent of kidney involvement.
Since lupus is an inflammatory disease, caused by an overreaction of the immune system, the treatment method is anti-inflammatory. In non-severe cases, doctors will prescribe non-steroid anti-inflammatory drugs.
Plaquenil is an anti-malaria drug which is effective in treating many of the manifestations of lupus (such as joint inflammation, skin diseases etc.). It was recently discovered to prevent flare-ups of the diseases. Most lupus patients are prescribed plaquenil for long periods of time. (This also requires ophthalmology check-ups, in case of rare side effects affecting the retina).
Corticosteroids are anti-inflammatory drugs. Many children require high doses of steroids when they begin taking the medication and during flare-ups. Lowering the dose is done gradually, with a doctor constantly monitoring the progress. They also have a number of side effects, especially during continued use. However, there are ways to avoid complications – exercise, low-sodium, high-calcium diet and vitamin D supplements. Most side effects pass with time.
A third type of drugs that are used to treat lupus are immunosuppressants. Many are still in the experimental stage.
What should I change in my child’s life to make sure he stays healthy?
First and foremost, you should try to have him lead as normal a lifestyle as possible. Other than limiting his exposure to sunlight, there is no reason to limit your child’s activities. Take your child swimming during twilight hours or at night. Your child should wear wide-brimmed hats when he goes outside, as well as long sleeves, even when it’s cloudy. Exercise is also important, as is a healthy diet.
Lupus is a long-term disease, characterized by flare-ups. A few decades ago, it was considered an extremely severe disease, with a high mortality rate and a higher rate of organ damage. New medications and more information about the disease have vastly improved treatment methods and prognoses among children.