Wednesday, October 06, 1999
Lupus: Unpredictable, misunderstood
Organizations fight to educate patients, public on disabling disease
BY SUE MacDONALD
The Cincinnati Enquirer
Every day, Sherry Pates takes 17 pills for a disease whose symptoms and problems she can never truly anticipate.
Among them are heart drugs, mood stabilizers, blood pressure medicines and steroids to control internal swelling from the chronic and sly disease called lupus, a word that means “wolf.”
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ABOUT LUPUS
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• What it is: A disease in which the body's immune system begins attacking its own tissues and organs, causing swelling, tissue damage and pain. Its cause is unknown, but doctors think it can be triggered by infections, antibiotics, ultraviolet light, extreme stress, certain drugs and hormones.
• Incidence: Lupus affects about 16,000 Americans a year, and 500,000-1.5 million are estimated to have it at any one time. It's 10-15 times more common in women than men, and more common in minority women than whites.
• Symptoms: Most common symptoms are achy joints, fever, swollen joints (arthritis), chronic fatigue, skin rashes, anemia, kidney damage, difficult and painful breathing, rashes, sensitivity to sunlight, hair loss. Symptoms can range from mild to severe to disabling to fatal, and they vary greatly from person to person.
• Three types of lupus: Discoid lupus causes a skin rash on the face, neck and scalp. Systemic lupus can affect almost any organ or system of the body, and symptoms vary widely and in severity from one person to another. Drug-induced lupus is a side effect of long-term use of certain drugs, especially hydralazine (for high blood pressure) or procainamide (for irregular heart beats).
• Treatment: There is no cure for lupus. Doctors treat symptoms, depending on how the disease affects each patient. Common treatments include anti-inflammatory drugs, steroids, heart medicines, anti-clotting medicines, arthritis drugs and the like. Diet, exercise and stress management can help patients cope with with symptoms.
Source:Lupus Foundation of America.
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Lupus, in fact, can be wolf-like — unpredictable, difficult to hunt down and persistent once it sets in.
It can cause everything from minor joint pain to severe heart problems, annoying skin rashes to unstoppable organ damage.
In Ms. Pates' case, it took doctors nearly two years to bring all of the lupus symptoms under control, and although the Avondale woman had to quit her job as a medical secretary because of the disease, she's taken up the cause of educating and inspiring others.
October is Lupus Awareness Month and Ms. Pates is among a number of local and national health advocates trying to educate other lupus patients so that they can make the dietary, lifestyle and medical changes necessary to cope with it. Lupus is more common in women than in men, and it strikes minority women more frequently than whites.
Dr. Evelyn Hess, immunologist at the University of Cincinnati Medical Center, notes that ongoing research into the body's immune system is a boon for people with lupus, a disease in which the body's immune system begins attacking its own tissues and organs.
“There are quite a number of national trials going on with various products aimed at knocking out the bad parts of the immune system,” Dr. Hess says. “Lupus one of the quite active areas of research. It really is a challenge to everybody.”
Ms. Pates was 36 when she first fell ill, initially with asthma, then pneumonia, then pericarditis (a heart infection) and joint pain in one foot. In time, the disease affected her central nervous system, causing her to lose feeling in the left side of her face.
“Mine was full-blown and it was attacking everything at one time — bam, bam, bam. They told me it was lupus, but I didn't know anything about it. I had never heard of it,” says Ms. Pates, who has changed that lack of knowledge for other women by forming a now-booming Inner City Lupus Support Group for about 200 women. It started in 1996 with five members.
Lupus is an immune disorder disease that can affect many different organs and cause a wide array of symptoms. Some people get nothing more than sunburn-like rashes. Some, like Ms. Pates and her colleague Pam J. Fields, had to quit work because the symptoms were so disabling. Ms. Fields, a former Taft High School teacher, is now education director for the Arthritis Foundation.
In 1997, Mrs. Pates took a lupus self-help course offered by the Arthritis Foundation, and the knowledge from that class helped her expand the Inner-City Support Group, which meets at Rockdale Baptist Church in the heart of Avondale.
“We share. We talk. We've found that education is critical,” Mrs. Pates says. “Education is the best tool for managing this disease.”
Support is growing
Today, the group sponsors monthly meetings, a warm-water exercise class twice a week at Melrose YMCA, a children's club, self-help courses, informational telephone line, lending library, counseling, emergency fund and community education.
All of the services help lupus patients with what can be a difficult and trying disease — one in which people look healthy but feel sick, fatigued, depressed, disabled and weak, often with severe pain.
“Lupus can attack any organ, and that's what makes it so diverse,” says Ms. Fields. “That's why it's so difficult to diagnose. Autoimmune means you're allergic to yourself, and because your immune system can attack any organ, it leads to a variety of disease manifestations. It can affect whatever it attacks, and however that organ reacts is what you have to deal with.”
Compounding the disease is the treatment, which often includes the long-term use of aspirin, non-steroidal anti-inflammatories, immune-suppressing drugs and steroids, all of which have side effects (some of them disabling).
Lupus (and its treatments) can also cause a host of other problems — dry eyes, vaginal dryness, infection risks, pregnancy complications, kidney problems and more. Some people with lupus also have to avoid the sun, because ultra-violet light is one of the triggers that can set off a flare-up of the disease.
Because doctors must treat symptoms as they occur, a good working relationship between doctor and patient is necessary to monitor changes, setbacks and improvements.
Mrs. Pates says one of the most difficult challenges with lupus is anticipating what each day will be like and convincing others that it is a truly disabling disease, even though people with lupus may not look sick.
“I don't care how confusing it is, people's lives are still at risk,” she says, noting that three members of the inner-city support group have passed away in the last calendar year. “We are sick but we are functional. We want people to take us seriously. Listen to us. Every day I'm learning something different about lupus, and I consider myself an expert.”
EVENTS
Several events will highlight Lupus Awareness Month in the Tristate:
• Lupus awareness walks will be held throughout Cincinnati on the next four Saturdays. Walkers will carry umbrellas — a symbol for people who are sensitive to sunlight because of lupus. Walks are 1-2 p.m. Saturdayat Fountain Square; Oct. 16 in Western Hills (location to be determined); Oct. 23 on Highland Avenue in Pleasant Ridge; Oct. 30 at Rockdale Baptist Church in Avondale.
• Lupus support groups meet monthly at Rockdale Baptist Church in Avondale (527-5044, Ext. 138) and at St. Luke Hospital in Northern Kentucky (527-5044, Ext. 136).
• Stories of Lupus, a 30-minute PBS documentary, airs 10:30 p.m. Thursday on Channel 48; 4 p.m. Oct. 21 on Channel 54; and six times during October on Channel 16. The documentary follows two TV producers who have lupus as they travel the U.S. in a recreational vehicle to talk with others affected by the disease. Their inspiration is the late TV newsman Charles Kuralt, who was diagnosed with lupus before his 1997 death.
• Third Annual Gospel Fest will be 6 p.m. Oct. 23 at Rockdale Baptist Church, Avondale, featuring the Charles Fold Singers and local gospel groups. Free; donations accepted for the Inner-City Lupus Group's emergency fund. 271-4545.
• What is Lupus?,a TV show hosted by lupus patient Sherry Pates, airs quarterly on Warner Cable Community Access.
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