Dedicated to Lupus Awareness
Source: Lupus Foundation of America, Inc., Lupus Fact Sheet
Provided by the Lupus Foundation of America, Inc.
Lupus is a chronic, autoimmune disease which causes inflammation of various parts of the body, especially the skin, joints, blood, and kidneys. The immune system normally protects the body against viruses, bacteria and other foreign materials. In an autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against "self."
Lupus is NOT infectious, rare or cancerous.
The Lupus Foundation of America market research data show that between 1.4 million and 2 million people have been diagnosed with lupus. (Study conducted by Bruskin/Goldring Research, 1994.)
Although the cause of lupus is unknown, scientists suspect that individuals are genetically predisposed to lupus, and know that environmental factors such as infections, antibiotics, ultraviolet light, extreme stress and certain drugs play a critical role in triggering lupus.
Lupus affects 1 out of every 185 Americans. Although lupus can occur at any age, and in either sex, 90% of people with lupus are women and during the child bearing years lupus strikes women 10-15 times more frequently than men. Lupus is more prevalent in African Americans, Latinos, Native Americans and Asians.
Only 10% of people with lupus will have a close relative (parent or sibling) who already has or may develop lupus. Only about 5% of the children born to individuals with lupus will develop the illness.
Lupus can be difficult to diagnose as the symptoms come and go and mimic many other illnesses. Some symptoms of lupus can be transient joint and muscle pain, fatigue, a rash caused by or made worse by sunlight, low grade fevers, hair loss, pleurisy, appetite loss, sores in the nose or mouth or painful sensitivity of the fingers to the cold.
Sunlight, infection, injury, surgery, stress or exhaustion can trigger "flare-ups" of lupus (a more active state of the disease).
Although lupus ranges from mild to life-threatening and thousands of Americans die with lupus each year, the majority of cases can be controlled with proper treatment.
Increased professional awareness and improved diagnostic techniques and evaluation methods are contributing to the early diagnosis and treatment of lupus. With current methods of therapy, 80-90% of people with lupus can look forward to a normal lifespan.
While medical science has not yet developed a method of curing lupus, new research brings unexpected findings and increased hope each year.
The Lupus Foundation of America has nearly 100 local chapters directly providing patient services, education, awareness and research in their local areas.
The disease comes in three forms: discoid lupus, which is limited to the skin and often identified by a rash on the face, neck or scalp; systemic lupus, which can affect almost any organ or system of the body; and drug-induced lupus, which presents itself after the use of certain prescribed drugs.
May is Lupus Awareness Month
It doesn't have to be May to help spread the word about lupus.
If you want to know more about lupus, contact
The Lupus Foundation of America, Inc.
The Lupus Foundation of America, Inc. is the lupus community's advocate on Capitol Hill. Please refer to the LFA Government Advocacy site to be informed on the current issues being addressed in Congress.
Please write to your two United States Senators and to your U.S. Representative and urge them to support the issues.
The Lupus Foundation of America (LFA) is excited to announce the formation of the first-ever Congressional Lupus Caucus in the U.S. House of Representatives. A congressional caucus is central to raising awareness of lupus on Capitol Hill and bringing lupus to the forefront of our nation’s health care agenda. The LFA identified the need for education and awareness of lupus with members of Congress and responded by spearheading the creation of this important Caucus. To learn more, please visit LFA's Web site.
Ask your Representative to join the Caucus today! Click here to take action!
The Congressional Lupus Caucus is championed and led by Representatives Tom Rooney (R-FL), Ileana Ros-Lehtinen (R-FL), William Keating (D-MA), and Jim Moran (D-VA). The purpose of the Caucus is to provide a forum in which Members of Congress and their staff can actively engage in a dialogue to improve the quality of life for people with lupus and their caregivers through supporting the advancement of lupus research and increasing awareness of lupus among the public and health professionals.
Please e-mail your Representative today and urge them to join the Caucus to help increase awareness of lupus. Visit the Caucus Web site for more information about the Caucus.
It has been more than 50 years since the U.S. Food and Drug Administration (FDA) approved a medication for lupus. With only three FDA-approved therapies for lupus, many people with lupus are prescribed off-label medications. These treatments can be costly and are not always covered by insurance. Affordable access to these prescribed drugs, however, can often allow people with lupus to live active and productive lives.
Medicare Part D currently prohibits coverage for off-label indications of non-cancer drugs other than those listed in designated pharmaceutical compendia. Although CMS allows for coverage of off-label indications supported by peer-reviewed literature for the treatment of cancer under Medicare Part D, people who live with diseases other than cancer, such as lupus, are not able to access medically necessary off-label drugs under the same standard.
H.R. 5732 would expand this policy and make it consistent across the entire Part D benefit, removing the treatment barrier and offering additional potential therapies for people enrolled in Medicare Part D. For people with serious or life-threatening conditions such as lupus, this legislation will provide greater access and affordability for necessary prescription treatments.
We encourage you to join us in supporting this vital legislation by visiting our legislative action center and urging your Representative to cosponsor H.R. 5732.
Thank you!
Very Important - Read about light bulbs and your health.
Wear the Official National Wrist Band. You can purchase one from The Lupus Foundation of America Store.
The Lupus Foundation of America, Inc. presents live moderated chats featuring the nation's leading experts in lupus. You can to ask a question and learn more about lupus from leaders in a number of medical disciplines associated with lupus.
"Walk for Lupus Now"™
Join the Lupus Foundation of America and Walk for Lupus Now™ to bring us one step closer to finding a cure! Walk to make a difference in the lives of people affected by lupus and raise urgently needed funds for research, education, and support services.
For more information please visit www.lupus.org/walk.
Lupus Fact Sheets in Other Languages
Lupus Publications (including Talking Books for Blind and Visually Handicapped under "Other")
Lupus patients needed for research studies
National Library of Medicine Interactive Tutorial on Lupus (Excellent tutorial)
Novel and Experimental Therapies for Lupus
Study Seeks Lupus Patients of Asian Descent (attention families of Chinese, Japanese, Hawaiian, Pacific Islander, Filipino, East Indian and Vietnamese descent)
About Cyndee Miller - Living with lupus over 40 years
Impact of Cyndee's Lupus On Her Family
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Page Last Updated: Tuesday, February 7, 2012
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