Man in the mirror
Michael Jackson put human face on autoimmune disease lupus
By MARILYN LINTON
"When we heard that the Man In The Mirror had the "disease with a thousand faces," many of us were in the dark about the condition that Michael Jackson had been diagnosed with in 1986.
In a recent CNN interview, Jackson's dermatologist, Dr. Arnie Klein, said that he knew when the pop star first walked into his office that he had lupus erythematosus.
One way the autoimmune disease broadcasts itself is by a classic butterfly rash that spreads across the upper cheeks and bridge of the nose. (In 1851, a French dermatologist described the rash as wolf-like, hence the name lupus.)
Jackson, said the Beverley Hills celebrity doc, had the butterfly rash on his face.
Given that there are approximately 50,000 Canadians living with lupus, it's not unusual to know or hear of someone with the disease, says Catherine Madden, executive director of Lupus Canada.
Raising awareness and educating people about the disease are among the organization's goals. Lupus is complex and called "the disease with a thousand faces" because each person's experience of being diagnosed, treated and living with lupus will be very different.
It can attack the skin, the joints, muscles, lungs, hearts, kidneys, brain or neurological system.
According to www.lupuscanada.org the disease (it affects women between the ages of 15 and 45 eight times more than men) is a chronic one whose symptoms can include extreme fatigue, joint pain, mouth ulcers, chest pain and hair loss. Klein confirmed that Jackson was virtually bald at the top front of his head.
Lupus sufferers are also prone to be super-sensitive under the sun, which is why Jackson was always under an umbrella when there wasn't a cloud in the sky.
In lupus, the immune system is unable to tell the difference between intruders and the body's own tissues. Trying to do its job, it attacks parts of the body, causing inflammation and creating the various symptoms -- some of them so debilitating that patients require hospitalization.
Lupus attacks are called "flare-ups" and in their most threatening form, they can seriously damage the kidneys and other organs.
The goal in treatment is to reduce inflammation and alleviate symptoms. To do this there's a whole arsenal of drugs available from mild anti-inflammatory meds to potent steroids.
Serious flare-ups are often followed by a chronic phase with less severe symptoms and, possibly, remission. Preventive measures help to reduce the risk of flare-ups, so patients need to pace themselves, control stress, eat well, exercise regularly, and promptly recognize and treat potential flare-ups.
It's because the disease takes so many forms that it's also difficult to diagnose. It's not unusual, says Madden, for people to take four to five years before finally getting a diagnosis (usually from a rheumatologist). Confirmation for lupus requires many things, including meeting several symptom criteria and a positive antinuclear antibody (ANA) blood test.
"Awareness and research in lupus is underfunded," Madden says of the "orphan" disease for which there is no cure. "One of Lupus Canada's goals is to get Canadians diagnosed sooner so that there's less damage to their bodies and they can learn how to live well with their lupus."
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Symptoms
In general, lupus signs and symptoms may include:
- Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
- Fatigue
- Fever
- Weight loss or gain
- Joint pain, stiffness and swelling
- Skin lesions that appear or worsen with sun exposure
- Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
- Mouth sores
- Hair loss (alopecia)
- Shortness of breath
- Chest pain
- Dry eyes
- Easy bruising
- Anxiety
- Depression
- Memory loss
Source: Mayo Clinic
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The Thousand Faces of Lupus
There are several celebrities diagnosed with, or rumored to have, lupus. They include former Philippine president Ferdinand Marcos, musician Seal, Hollywood St. Elmo's Fire producer Lauren Shuler Donner, Savannah fiction writer Flannery O'Connor (who died from its complications), Trick Daddy and Anna Nicole Smith. "
