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« on: October 31, 2007, 10:50:12 pm » |
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Woman's fight against lupus more tolerable after diagnosis
AT&T employee Crystal McKinnis was diagnosed with lupus in 2000, and as part of her health regimen eats a special diet and walks daily through downtown Jackson with co-workers Danielle Simmons and Kimmerly McInnis. The toughest part about living with systemic lupus, for Crystal McKinnis, came before the diagnosis.
Nobody - family, friends, professors, employers - realized the extreme fatigue, head-to-toe achy joints, nausea and vomiting she experienced daily were symptomatic of an autoimmune disease she could not control.
"It took a long time for my family to understand what was going on with me, that 'Crystal's not just being lazy,' " said the 26-year-old consumer marketing representative, who lives in Jackson. "Nobody understood." McKinnis, then an 18-year-old college freshman, also was in the dark.
"I wasn't doing anything too strenuous," she said. "If I went to watch a game with friends on Saturday, and out to eat that evening, I couldn't move or walk for four days."
A year after first exhibiting symptoms and several visits to doctors and emergency rooms, McKinnis was referred to a rheumatologist, who identified the source of her agony. In the seven years since the diagnosis, she has spent more than her share of time in hospitals. Last year, she had a rib removed because it was pressing on a vein, causing blood clots. Before that, she had a tonsillectomy to combat the constant upper respiratory infections she had become more susceptible to because of a weakened immune system. In 2002, doctors removed her gall bladder because she wasn't passing waste from her body.
In patients with lupus, the immune system attacks the body, said Dr. Neal Shparago, a rheumatologist with Arthritis Associates of Mississippi in Jackson. It can affect any organ in the body, causing inflammation, pain and damage.
Because the early symptoms are sometimes vague, lupus, which is not diagnosed by lab tests alone, is not always an easy disease to pinpoint, Shparago said.
"A number of diseases can masquerade as lupus and vice versa," said Dr. John Jenkins, associate professor of rheumatology at University of Mississippi Medical Center.
"Even for the experts it can be difficult sometimes. Rheumatologists "are sometimes considered medical detectives because we can sort out these diseases."
Women account for more than 90 percent of all lupus cases, which typically strikes during the childbearing years - ages 15-45 - according to the foundation. The disease is two to three times more likely to strike African Americans, Hispanics, Asians and American Indians than whites. Black women are disproportionately affected.
When Renee Williams, assistant professor of nursing at UMC, began experiencing swelling and pain in her neck, shoulders and fingers a decade ago, she attributed it to arthritis. She felt like she had a bad crick in her neck, and it hurt to open her jawbone widely.
"I only knew people with severe forms of lupus, which is very debilitating," said Williams, who celebrated her 52nd birthday last week. "I was not as aware of the symptoms of mild lupus."
Williams, who is also director of Continuing Education at UMC, considers herself "blessed" that her mild case of the disease has not worsened over the years. She has not experienced complications or serious side effects and takes medication to keep it stabilized.
"I just have to remember to avoid stress whenever possible. Although, if I run out of my Celebrex (an anti-inflammatory drug) or Plaquenil (a disease modifier) and don't refill the prescription soon, I become symptomatic."
When flare-ups do occur, she takes a prescribed muscle relaxer and a steroid.
Treatment depends on severity and is based on individual needs, Shparago said. However, the first line of therapy is often hydroxychloroquine (Plaquenil).
If symptoms are more severe, other medications are prescribed accordingly, including chemotherapy drugs for life-threatening complications that may involve the brain, lung, or heart, as well as others not specifically approved for lupus, Jenkins said.
Patients with mild cases also may develop severe complications, Jenkins said. Less than half of all patients who suffer from lupus remain mild their entire lives.
Treatments for lupus have not changed in more than 20 years.
"Lupus is an uncommon disease," Jenkins said. "As such, there is not a lot of interest in investing money into it by the pharmaceutical industry."
Despite the void in new breakthroughs, the medications are effective.
"The most common myth is that lupus is a death sentence," Shparago said. "It certainly is not. When treated aggressively and appropriately, a patient may live a normal lifespan."
After her last surgery, McKinnis had nerve damage and lost the use of her right arm for six months. She couldn't work for a year or attend classes.
In remission for more than a year, she has taken no drugs for lupus in eight months, a drastic improvement for someone who once took nine different medications - everything from pills to injections to an IV- a day.
Despite the remission, McKinnis sees a rheumatologist, cardiothoracic specialist, hematologist, neurologist and general doctors every three to four months. She also gets a computed axial tomography, or CT, scan every six months.
The frequent doctors' visits might be overwhelming to some, but McKinnis, who earned her bachelor's degree in May, accepts it as part of her prognosis.
"Doctors have given me clearance that I can do anything I want to do," she said.
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« Last Edit: October 31, 2007, 10:52:31 pm by Admin »
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside. www.LupusMCTD.com Represents: 1) We are patients helping researchers build a future for the lives of others... 2) Where HOPE is a WORK In Progress 3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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