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Lupus Patients Reduce Stress to Avoid Flare Ups
By Sandra JordanSpecial to the NNPA from the St. Louis American
(NNPA) - Sometimes the body's immune system can turn on itself, attacking its own tissues and organs -unable to distinguish its own good cells from invading cells. Such is the case with lupus, a serious, chronic inflammatory disease that can damage different systems in the body and how they function.
"It can be very frustrating so the support system that you have is extremely valuable," said Gail Ferrer, of Florissant, Mo., who was diagnosed with lupus 19 years ago when she was pregnant. "I was seeing a rheumatologist before then. I didn't fit into the grid of lupus, but they knew there was a problem."
It is unknown what actually causes lupus, although a combination of genetics and environment is suspected. Previous research has shown that lupus occurs more often, and with greater severity, among persons of non-European descent- more common among Blacks and Asians; and nine out of 10 people with lupus are female in their childbearing years.
One reason may be the X chromosome. A report by the National Institute of Arthritis and Musculoskeletal and Skin Diseases theorizes since the X chromosome represents about five percent of the total DNA in women's cells, and only 2.5 percent of the DNA in men's cells, scientists speculate that at least some of the genetic factors may be on the X chromosome.
After her son was born prematurely, lupus made Ferrer very ill.
"I started having pericarditis (inflammation of the membrane surrounding the heart) and pleurisy (inflammation of the membrane surrounding the lungs). Everything was wrong at that time so I had to do the prednisone thing," Ferrer said.
"Now that I'm a little bit older-I don't have flare-ups like I used to have. The last flare up that I had that was really bad was in 2003. I had an ulcer on my leg which caused the flare-up. When they tried to heal me, the ulcer wouldn't heal. I ended up in a wheelchair for a couple of months and I was bald for about six months. It took a couple of years for it to grow back."
Hair thinning and hair loss can be experienced by many people with lupus. There are four types of lupus erythematosus, with varying severity.
Systemic - can affect many parts of the body and can be mild or serious, and usually the one commonly referred to as lupus, or SLE.
Discoid - mainly affects the skin and may produce a rash on the face, scalp or elsewhere.
Drug-induced -can be triggered by long term use of certain prescription medicines. The symptoms are milder and the disease goes away when the medicine is stopped. Drug-induced is more clearly linked to the use of an antipsychotic drug, a high blood pressure medicine, tuberculosis drug and a heart medicine.
Neonatal - is rare and affects newborn babies. A mother with certain antibodies that are linked to autoimmune diseases can pass them to the developing fetus - even if the mother has no signs or symptoms of an autoimmune disease. A baby with neonatal lupus may experience a rash in the weeks following birth. Neonatal lupus may last about six months before disappearing. (Source: Mayo clinic)
The symptoms of this autoimmune disease can mimic other disorders and can be hard to diagnose. Symptoms include severe fatigue, joint pain, swollen glands, general feeling of malaise, skin issues, fever and painful swelling of membranes surrounding vital organs, such as the heart and lungs.
Tiredness was one of the symptoms Karla Johnson of St. Louis experienced when she was diagnosed with lupus at age 19. She found herself very vulnerable to catching every little germ and bug that was going around and her joints ached all the time.
"They put me on a list of meds. I went into complete remission for a couple of years then it manifested all over again. When it manifested the second time - that's when it hit me hard. They put me on stronger medicines -like prednisone, and heavier doses," Johnson said.
She developed Raynaud's syndrome-which is blood vessel spasms in the fingers, toes, ears or nose, usually brought on by exposure to cold, and is associated with lupus and other autoimmune disorders.
"I lost a fingertip due to it. It's a common side effect of lupus, as well as hair loss and thinning. It was very devastating-it throws your balance off, your writing and everything," Johnson said.
Devastating as it was, it was heart failure at age 40 that turned her into an advocate in the fight against lupus.
"The doctor said it was not because of high blood pressure or clogged arteries. It was because the muscles were working to hard. Basically the disease weakened the heart muscles," Johnson explained.
Severe manifestations of lupus can lead to kidney failure, heart attack, atherosclerosis, or even death. According to the report, Overcoming Barriers to Drug Development in Lupus, commissioned by the Lupus Foundation of America, the disorder "stands apart" from other chronic autoimmune diseases because the majority of therapies currently used to effectively manage lupus have not been approved by the FDA for the disease. The report said many of these medications often have side effects that can be worse than the primary disease, including osteoporosis, weight gain, high blood pressure, diabetes, sterility, liver damage, and the increased risk of infection.
You can't catch lupus from another person. Although there is no cure, with treatment, lupus patients can have active lives, particularly if they try to remove stress from their life.
"I pretty much changed my lifestyle ... I've kind of removed the stressors. The things that were just energy-draining. Once your energy is drained you are more sensitive to go into a flare," Ferrer said. "For me, it starts with extreme fatigue and joint pain, but it's a little bit different on every body. Takes medication every day -and it helps tremendously."
And when she is feeling up to it, Ferrer walks to stay active-at the mall, in her neighborhood or on her treadmill at home.
Ferrer is now a volunteer co-facilitator for the North St. Louis County Support Group of the Lupus Foundation of America. It meets the second Thursday of every month (minus December and summer months), 6:30 - 8:00 pm at Northwest Healthcare on Hanley Rd.
Johnson said try to stay stress-free and be around healthy people.
"I suffer with pain everyday but I know how to deal with it so I just keep on moving. I'm tired a lot of times, but people don't really see that," Johnson said. "It's hard to just get up and motivate myself. As the day goes on and progress-you're much better with it. But when the evening goes on and the weather changes... cool or humidity... it can affect the joints."
Johnson said her uncle also has lupus. "We kind of battled this together. He survived it and we are still kicking along."
For more information, go to CouldIHaveLupus.gov or contact the Lupus Foundation of America at (314) 644-2222, toll-free at 1-800-9LUPUS6 (958-7876) or online at LupusMo.org.