May is designated as Lupus Awareness Month, aimed at increasing public knowledge about lupus, a chronic autoimmune disorder that impacts millions. The celebration is vital for enlightening others about the disease and fostering understanding and assistance.
Most Filipinos don’t know what lupus is but so many famous people are afflicted with the disease. To name a few: Toni Braxton, Nick Cannon, James Garner, Selena Gomez, Michael Jackson, Jo Koy, Lady Gaga, Julian Lennon, Roger Moore, Will Smith, Snoop Dog, Ted Turner, and Ray Walston.
In 2009, television host and actress Kris Aquino admitted that she is battling a “form of lupus.” After losing 15 pounds in one month, she went to Singapore to seek medical attention.
In a Facebook Live broadcast, she said, “Now, I can tell you the truth, I’m allergic to every single medicine that can cure you or at least manage your symptoms if you have lupus. All my doctors are doing now is delaying it. They’re delaying the inevitable.”
It takes several months, if not years, for people to know that they have the disease. Lupus, after all, is a disease that most doctors miss. “Lupus is a disease that is hard to diagnose and hard to describe,” admits Professor Pao Hsii Feng, a clinical professor at the National University of Singapore.
With those words, Prof. Feng has brought us to a disease that exhibits symptoms so vague that doctors are left scratching their heads as a test after test fails to detect anything amiss. “What is wrong with my patient?” a doctor may ask himself.
“It is difficult to diagnose lupus because it may have the same symptoms as with many other illnesses, therefore consulting a rheumatologist is the best thing to do,” says Dr. Geraldine Zamora-Racaza, a clinical associate professor at the University of the Philippines College of Medicine.
“A combination of symptoms is suggestive of lupus if other causes, including infection and malignancy, have been ruled out,” says Dr. Alberto Santos-Ocampo, a Filipino rheumatologist who works at the Straub Clinic and Hospital in Honolulu, Hawaii.
“Diagnosis is usually done by taking a history of the patient and doing a full physical examination. The diagnosis is then confirmed by taking blood tests,” adds Prof. Feng.
The St. Luke’s Medical Center (SLMC) describes it “a classic autoimmune disease.” This happens when “the body’s own immune system, the one we rely on to fight off colds and viruses, suddenly turns against us, uncontrollably, and destroys our otherwise normal and healthy organs and tissues.”
According to SLMC, the body’s immune system secretes antibodies, warriors against bacteria and foreign threats. “In lupus, our system becomes confused as to which is which – which tissue is healthy, and which tissue has a threatening agent,” the medical center explains.
Lupus is also systemic – which is why the most common form is called systemic lupus erythematosus (SLE). “Systemic is when its manifestations are widespread across the different organs of the body, as most autoimmune diseases are,” the SLMC points out. “It can affect your skin, face, scalp, gastrointestinal tracts, renal and circulatory systems, muscles and joints, and brain and mental functions.”
Generally, lupus strikes women (90%) more than men (10%). “Lupus is more common in women, and the first symptoms are usually felt in their 20s to 30s,” says Dr. Geraldine Zamora-Racaza, co-author of the book, Living with Lupus. “However, lupus can also affect men, the elderly, and even children. It is more widespread than most people think. It is therefore important to be aware of lupus and its symptoms.”
The more common symptoms of lupus include achy or painful joints and muscles; unexplained fatigue, “parang low-batt;” fever without a known cause; rashes, especially across the cheeks and bridge of nose (usually caused by sun exposure); frequent mouth sores (singaw); excessive hair loss and even balding; paleness; swelling of area around the eyes and the legs; fingers that turn white/blue with cold exposure; or shortness of breath. “One, some, or all of these may occur in people with lupus,” Dr. Zamora-Racaza says.
Actually, there are three types of lupus. Aside from SLE, there’s discoid lupus and drug-induced lupus. “Discoid lupus is descriptive of a characteristic skin lesion which may be found in SLE or may exist independently without any systemic features,” explains Dr. Sandra V. Navarra, co-founder and adviser of the Lupus Foundation of the Philippines.
Drug-induced lupus are those caused by drugs. “The side effects of certain drugs mimic lupus symptoms such as pain in the joints, arthritis, rashes, fever, and fatigue,” the SLMC says. “Drugs associated with lupus are: procainamide to combat irregular heartbeat; hydralazine for dilating arteries; isoniazid, an antibiotic; methyldopa, an antidepressant; and chlorpromazine, an antipsychotic.”
The baffling disease was given its name by a 19th century French doctor who thought that the facial rash of some people with lupus looked like the bite or scratch of a wolf. Lupus is Latin for “wolf” while erythematosus is Latin for “red.” Systemic means that it may affect many parts of the body, such as the joints, skin, kidneys, lungs, heart, or the brain.
More often than not, people don’t know they have the disease because they don’t know so much about it. As such, actual figures of people with lupus, particularly SLE, are hard to come by. But the Geneva-based World Health Organization (WHO) contends that incidence of lupus has nearly tripled over the past four decades.
In the Philippines, Dr. Navarra said that from 1995 to 2010 about 2,273 SLE patients were seen in various rheumatology training institutions and private rheumatology clinics. She cited the statistics based on the records of the Lupus Inspired Advocacy Project.
That seems to be bad news. But the good news is that ten-year survival rates are now up by 80 to 90 percent, compared to 50 percent in the 1950s. A major factor for this is earlier diagnosis, resulting in treatment during less severe stages. “This has a positive impact on the prognosis and outcome of the disease,” says Prof. Feng.
But still, the disease is potentially fatal especially when misdiagnosed and inadequately treated, according to Dr. Ratanavadee Nanagara, associate professor in medicine of the Department of Medicine at the Khon Kaen University in Thailand.
Although lupus is not contagious, it is lethal. “Lupus is dangerous when it involves the kidneys, brain, heart and the blood elements,” warns Prof. Feng. “If you have lupus involving the brain, you may develop fits, depression and other psychiatric symptoms.”
Women with lupus have an increased risk of miscarriage. “Lupus increases the risk of high blood pressure during pregnancy and preterm birth,” the Mayo Clinic says. “To reduce the risk of these complications, doctors often recommend delaying pregnancy until the disease has been under control for at least six months.”
Lupus also has a direct effect on the heart. “Lupus can cause inflammation of your heart muscle, your arteries or heart membrane,” the Mayo Clinic informs. “The risk of cardiovascular disease and heart attacks greatly as well.”
Oftentimes, patients with severe lupus die. “They often die from kidney failure or infection,” says Dr. Alberto Santos-Ocampo, a Filipino rheumatologist who works at the Straub Clinic and Hospital in Honolulu, Hawaii. “Patients with SLE are prone to infections, because of their abnormal immune system, and because of the immune suppressing properties of the drugs they are given to control their disease activity.”
Are there some ways a person with lupus can avoid symptoms and complications? “If you are already diagnosed with lupus, practice sun protection,” suggests Dr. Zamora-Racaza. “Try to stay out of the sun, use an umbrella, and apply sunscreen with at least SPF 30. There is something about the ultraviolet rays of the sun that causes damage to the cells and can lead to a flare of lupus symptoms. Take note that this happens only in people with lupus.
“Since you will be hiding from sunlight and will most probably have at least some steroids in your medicine list, taking adequate calcium and vitamin D, either naturally through food intake or supplements, is recommended,” she continues. “Try to get a good number of hours of sleep at night. Try to avoid stressful environments. Stress has been found to worsen lupus symptoms and trigger flares.”
But since it takes time to diagnose someone having lupus, it may be too late to treat the disease once diagnosed. “We can control lupus, but not cure it,” admits Dr. Santos-Ocampo. Prof. Feng also says, “In its early stages, lupus is a treatable disease. However, if proper treatment is delayed then it can be fatal.”
As such, Prof. Feng recommends, “It is important for patients with lupus to see a doctor experienced in the treatment of the disease. Since lupus is a chronic condition characterized by exacerbation and remission, patient compliance is very important. This means patients must be well educated with regard to the disease.”
