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Media Releases
October is Lupus Awareness Month
How to Find a Specialist for Lupus
Columbia, Mo. (October 24, 2006) For a disease as disguised and potentially fatal as lupus, the right doctor can shorten the four and more years a person with lupus normally waits for a correct diagnosis.
Known as the "great masquerader" among illnesses, lupus is a chronic disease in which the immune system, for unknown reasons, starts to attack its own body. Lupus causes inflammation and may seriously damage to the skin, blood, joints, kidneys, heart and lungs. An estimated 1.5 million Americans have lupus, and 90 percent of them are women, according to the Lupus Foundation of America.
Early treatment can often prevent serious complications but the disease is particularly difficult to detect for untrained eyes, because "it mimics so many other types of diseases," says Allison Harper, program coordinator of the Lupus Foundation of America, the Missouri Chapter.
The unique role a lupus specialist plays, Harper says, is to "do the necessary detective work" to discover the underlying cause of all vague symptoms, such as fatigue, fever, skin rashes, swelling, infections, and chronic pain. "A specialist is also specially trained to spot clues in the medical history which may show a pattern that can lead to a proper diagnosis for lupus."
Who is a lupus specialist?
A rheumatologist, who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones, is recognized as the specialist for lupus. To be a board certified rheumatologist, says Harper, one has to attend four years of medical school and three years of training in either internal medicine or pediatrics, followed by another two to three years of fellowship in specialized rheumatology training. If your lupus is only limited to the skin, you may also consider seeing a dermatologist.
How do you find a lupus specialist in your region?
Various resources can help you find a specialist for lupus. The American College of Rheumatology is the professional organization of rheumatologists. You can look for a rheumatologist by region or by name in its online directory:
http://www.rheumatology.org/directory/geo.asp.
MEDLINEplus.gov, a website by the National Library of Medicine and the National Institutes of Health, offers an extensive online directory where you can search for general doctors, specialists, and hospitals in your area. The American Medical Association is another reliable source of physicians' information, where you can find lists of doctors of different specialties in your area.
The Lupus Foundation of America (http://www.lupus.org) has nearly 300 chapters, branches and support groups in 32 states. "A lupus patient may also contact their local chapter for a listing of rheumatologists in their area as well," Harper says.
If you are not sure if the physician you are seeing is board certified, call the American Board of Medical Specialties for confirmation.
What if no specialist is nearby?
It is important for anyone diagnosed with lupus to have regular tests to prevent or minimize damage to vital organs, especially the kidneys.
If a rheumatologist is not available, a person with lupus may need to work closely with their primary care physician instead. "Their [primary care physicians] knowledge of lupus may be limited," says Harper, "so you may need to provide them with information and materials," including pamphlets, books and videos that can be used to learn more about a variety of issues regarding lupus, which are available from the LFA and its chapters.
The Missouri Arthritis Research Rehabilitation and Training Center (MARRTC) was established in 1971 at the University of Missouri-Columbia Arthritis Center. MARRTC is funded by the U.S. Department of Education's National Institute on Disability and Rehabilitation Research (H133B031120) and is the only federally funded arthritis rehabilitation research and training center in the country.
As part of the MU Health Communication Research Center (HCRC), MARRTC's mission is to become a national leader in the areas of disability management and communication, improve the quality of life and promote independent living among people who have arthritis and arthritic conditions. MARRTC's core message is "Disability is everyone's issue."
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