The terrible ‘wolf’
A disease that especially targets women — systematic lupus erythematosus
by Helen Chan
Lupus means “wolf” in Latin. It was used in the 13th century to describe ulcerative lesions, which are infected wounds of the skin, a characteristic of the disease.
Seventeen-year-old Miss Leung Yuk man is a lupus victim. She was feverish and could not bend her fingers when she returned from Mainland China during a summer vacation when she was in Primary 5. After about a month, a rash appeared on her skin and her urine turned the colour of tea.
However, her case is one of the mildest forms of lupus.
Dr. Raymond Wong, a consultant physician in the Department of Medicine at Queen Mary Hospital, said that systematic lupus erythematosus is a disease in which “the normal immunity of the patient is upset”.
“The patient produces an excess of blood proteins called antibodies. These may directly or indirectly cause problems in any organ of the body.”
Dr. Wong said systematic lupus erythematosus is thus a “blood disorder”.
“Antibodies may end up causing a variety of skin rashes,” explained Dr. Wong, “sticking to the walls of blood vessels or depositing in the kidney, brain, lungs and joints.”
As a result, symptoms of lupus include red or spotty rashes on the skin, balding, joint muscle pain, fever, headache, depression, kidney inflammation and chest pain, especially pleurisy, which is a sharp pain in the lower parts of the chest when breathing deeply.
Said Dr. Wong: “By far the largest number of lupus sufferers are young women, especially those in their teens and twenties. Most clinics throughout the world find that women sufferers outnumber men by 9 to 1.”
Mr. Michael Chan Tak Wai, 29, of Wah Fu Estate, is one male victim who did not beat the odds. He suffered from the disease when he was in his teens. He did not realise the maximum possible damage lupus could do to him.
As a clerical assistant of a vocational rehabilitation and retraining centre, Mr. Chan had never even heard of lupus.
“Until the doctor told me what was wrong with me, I had no idea of such a disease,” said Mr. Chan
He suffered 80 percent loss of kidney function. He could not walk properly as both of his hip joints were severely damaged and needed replacements.
Mr. Chan was forced to take some rest during the day when his limb muscles weakened to such an extent that he could barely stand by himself.
The cause of lupus is not known. According to Dr. Wong, though research has provided possible evidence that lupus is related to hormones, infections through viruses, as well as heredity, may also cause lupus.
“At present,” said Dr. Wong, “it is believed that there is a weak inherited tendency to lupus. However, other factors are needed to bring out the disease.”
Sunlight, more specifically the ultra-violet light, can further activate the disease.
“A number of patients apparently first develop the disease after a holiday under the sun. Some antibodies in blood will multiply in number, but the reasons are not understood yet.”
Dr. Wong said that some women are more likely to get lupus, particularly in the months after giving birth. The disease may be brought out by reaction with some drugs.
He said, “One thing doctors can be sure about is that lupus is not a transmitted disease. Having social contact or sharing meals with lupus patients will not lead to infection.
“It would be difficult for a doctor to diagnose lupus as quickly as locating AIDS patients, because the symptoms of one lupus victim do not necessarily match with those of another patient,” said Dr. Wong.
There are several misunderstandings about the disease. Thirty years ago, before the rapid advancement on the study of lupus, most people thought that lupus was incurable and the disease resembled cancer of the blood.
With the introduction of more specific tests for lupus, the death rate for lupus patients has become relatively low compared to those of other diseases such as cancer.
“Besides routine blood tests,” said Dr. Wong, “several invasive tests examining some of the organ tissues, such as liver or kidney biopsy, would be done if a patient is suspected of having lupus.”
There are several drugs used in systematic lupus erythematosus. Aspirin and “non-steroidals” provide relief from pain. Anti-malarials are found to help those patients with skin and joint disease. Until now, the reason why they work in lupus remains largely unknown.
Said Dr. Wong: “Effects of steroids are miraculous and life-saving. They help to ease joint pains, lessen the rashes, relieve breathing difficulty and bring down the fever. However, the side-effects are overwhelming.”
Miss Scholastica Tai, 47, a former nurse, was diagnosed as having systematic lupus erythematosus. She said, “The idea of suicide came across my mind when I stayed in the hospital in the first few days. “The amount of medicine I took each day pushed me to the verge of death.”
Miss Leung was also suffered from the side-effects. She said, “My appetite was noticeably increased. My face ballooned.
“My sleep patterns changed. I slept by day and stayed awake at night,” said Miss Leung.
Lupus patients are occasionally depressed after taking steroids. As lupus is a blood disease, some patients are given “immuno-suppressive” drugs. These drugs are usually given to patients requiring large doses of steroids.
Lupus patients are advised not to take pills without a physician’s advice. Many of them have a particularly “allergic” history like developing rashes and other side-effects on a variety of drugs.
“I am advised that excessive salt in my diet and over-eating do no good to my health. My hands will swell if I eat too much salt,” Mr. Chan said.
Dr. Wong said there is a misconception that each lupus patient must be treated with steroids. The use of this drug actually depends on the differentiating symptoms of the patients.
The Hong Kong Lupus Association was established in 1988 to help lupus patients and their family members overcome the difficulties during their recovery and to provide information about the disease.
Self-help groups are organized by the Lupus Association for the lupus patients. Activities include sharing experiences by the patients and organizing talks. The talks aim at publicizing systematic lupus erythematosus, in order to ease those misconceptions about the disease.
Said Miss Tai: “Family support is one of the most important factors that keeps me from ending my life. “To patients of long-term diseases, there will not be any future if their families are reluctant to show them some encouragement.”
