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The Voice of the Black Community

Life and Religion

Standing up to the ‘Great imitator’
Support system is key in the battle against lupus’ effects
 
Published Thursday, May 10, 2012 8:07 am
by Ryanne Persinger

When Charlene Meadows was diagnosed with lupus at age 20, doctors told her she wouldn’t live past 40.

PHOTO/CALVIN FERGUSON
When Charlene Meadows of Charlotte was diagnosed with lupus at age 20, doctors didn’t expect her to live past age 40. Twenty-three years later, she’s not only alive, but determined to help others battle the autoimmune disease. “I consider myself blessed,” she says. “I’ve always had people who backed me up.”


She’s 43.


“I had a 21-year-old guy friend who passed away from lupus,” Meadows said. “So let me tell you that when I turned 40 I had the biggest party. I invited 180 guests. I had beaten the odds and you feel good when you beat the odds.”


When Meadows wakes up in the morning she takes six pills: One for blood clots and another to control inflammation. There’s Vitamin B and Vitamin D for her bones; a kidney/high blood pressure medicine and another for her migraines.


She has three doctors: a primary care physician, a rheumatologist who manages her lupus and nephrologists for her kidney.
Meadows also has insomnia but tries to get six to eight hours of rest.


Born with one kidney, Meadows was athletic enough to participate in track and field. But dating back to middle school she remembers having chest pains and swelling in her ankles, knees and wrists.


When she was 20, Meadows was rushed to the emergency room where doctors mistook her lupus for pneumonia before she was diagnosed.
“I always felt fatigued and sick,” she said. “Initially (lupus) took a huge toll on me. I was stressed out and on suicide watch. And because of the swelling in my joints, I had a hip replacement at age 27.


Meadows was diagnosed with systemic lupus erythematosus, which affects joints and organs such as the kidneys, heart muscle, nervous system and brain. Other forms of lupus include:


• Cutaneous lupus erythematosus, which is limited to the skin. Can cause a rash on the cheeks and across the bridge of the nose known as the butterfly rash. Hair loss and changes in the pigment, or color, of the nose.


• Drug-induced lupus, which develops after a drug reaction.


• Neonatal lupus, which affects newborns.


According to the Lupus Foundation of America Piedmont Chapter, an estimated 45,000 North Carolinians suffer from the disease and an estimated 1.5 million Americans have it.


“Because it’s a chronic autoimmune disease it begins to attack the body itself,” said LFA Piedmont Chapter President and CEO Christine John-Fuller of Charlotte. “It can look very different person to person. It’s important to take the disease seriously.”


Symptoms include fatigue, headaches, blood clotting, swelling in feet, legs or around eyes, pain in chest, hair loss, ulcers in mouth or nose, painful and swollen joints, sun or light sensitivity, fever, or fingers turning white or blue in the cold.


“Sometimes lupus is called the great imitator,” John-Fuller said. “It can look like so many other things.”


She added: “I think the biggest symptom is fatigue. I’m not talking about someone just being tired, we’re talking about an 18-year-old having her mother bathe her.”


No one knows for sure what causes lupus, but the U.S. Department of Health and Human Services Office on Woman’s Health says black women are three times more likely to get the disease.


“There is no cure for lupus,” John-Fuller said. “There is a 10-15 percent chance of fatality. But it ranges from person to person. We have people that take care of themselves and are able to live full and rich lives.”


For Meadows, she said having a huge support system helps. 


“I consider myself blessed,” Meadows said. “I’ve always had people who backed me up.”


Meadows’ mother, Earlene Andrews, admits that it’s been a tough road for her daughter.


“As she gets older it’s never getting better,” Andrews said. “When she first got sick I couldn’t even stand to be around her, she was in so much pain. It’s been upsetting because there are so many medications she can’t take to help her.”


Andrews said she really didn’t know much about lupus until Meadows told her a friend had it. A year later, her daughter had it, too.


“It’s been so bad some days that I thought I would wake up and go into her room and she would be dead,” Meadows said. “That’s how bad it’s been. It’s tough seeing your child in that condition.”


Meadows eats right and exercises to maintain her weight, but it’s difficult because of her hip replacement, her mom said.


“She’s also had chemotherapy to try and stabilize the disease and that put her into early menopause,” Andrews said. “She was in menopause in her mid-30s.”


“They put you on all of these meds that really deteriorate your bones. If (my daughter) misses one dose I can really tell.”
Andrews continues to pray for a cure for the disease.


“They do all they can for things like AIDS which most people get on their own and they’re not trying to find something for things people can’t help to get,” Andrews added.


Meadows works a part-time job and attends Central Piedmont Community College. She says more people are becoming aware of the disease since celebrities like Cori Broadus (Snoop Dogg’s daughter), Toni Braxton and retired major league baseball player Tim Raines have announced they have the disease.


“More research has been done for lupus,” Meadows said. “I just want people to understand what a person with lupus goes through because they are always in pain. When you know someone has lupus try to be a strong support system for them.”


For more information, call the LFA Piedmont Chapter at (704) 716-5640 or (877) 849-8271.


On the Net:
Lupus Foundation of America
www.lupus.org

LFA Piedmont Chapter

www.lupuslinks.org

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