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Walk-Along for Lupus

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Preparing for the 16th Annual Walk-Along for Lupus on Sunday, October 18!Mood: excited excitedPosted at 3:27 PM Sep 14 view more

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  • Walk-Along for Lupus

  • 38 / Female
  • BELLMORE, New York, US
  • Last Login: 9/29/2009

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    The Lupus Alliance of America LI/Q Affiliate a not-for-profit foundation, has been helping those with lupus and their families since 1955. Our mission is to help those with lupus live better lives while we search for a cure. To find out more about us, become our myspace friend, or you can e-mail us at:info@lupusliqueens.org.

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    .. LUPUS FACTS ..

    Over 2 million Americans have lupus; a disease where the immune system, for unknown reasons, becomes hyperactive and attacks normal tissues and organs. Lupus is a serious, life-threatening disease that affects more Americans than multiple sclerosis, cystic fibrosis, sickle cell anemia and leukemia. However, very few people know about this confusing and often difficult to diagnose disease.

    Too few people understand the seriousness of this confusing and incurable disease, including the individuals who have it.

    Lupus symptoms such as the following are often ignored because they mimic many other illnesses and diseases.

    1. Achy and swollen joints

    2. Unexplained fevers

    3. Extreme fatigue

    4. Hair loss

    5. Skin rashes

    6. Seizures

    7. Mouth and nose ulcers

    8. Chest pain

    9. Memory loss

    10. Sensitivity to the sun

    Even doctors can be perplexed by this disease, and many people believe it is not life-treatening because many times the people who have lupus do not appear sick.

    Lupus, can affect every organ in the body including the kidneys, lungs, heart, skin, muscles, brain and more. Many people who have lupus have been on chemotherapy to help stop their lupus from attacking their organs. Others take lifelong doses of steroids such as Prednisone which causes weight gain, mood swings, stunted growth and bone weakness. Many others take anti-malarial drugs such as Plaquenil which can cause eye disorders like glaucoma.

    Most patients take more than 5 pills on a daily basis and see their doctor at least once a month. Most people with lupus have more than 4 doctors who help the many issues that arise when lupus attacks your body.

    Children as young as 6 have been diagnosed with lupus, and 90% of the people with lupus are women between the ages of 15-50.

    .. DIAGNOSING LUPUS ..

    The following are criteria that doctors look for and use to diagnose lupus. Diagnosing lupus can be difficult. There is no single set of symptoms that is specific for lupus. Many of the lupus symptoms mimic other illnesses, are sometimes vague and may come and go. Currently, there is no single laboratory test that can determine if a person has lupus or not.

    Diagnosis is usually made by a careful review of the patient’s entire medical history coupled with an analysis of the results obtained in normal routine laboratory tests and some specialized tests related to immune status.

    Eleven criteria for the diagnosis of lupus were established by the American College of Rheumatology. A person must have four or more of these symptoms for a lupus diagnosis. The symptoms do not have to occur at the same time.

    * Anti-Nuclear Antibody (ANA): Positive test for anti-nuclear antibodies in the absence of drugs known to induce it.

    * Arthritis: Arthritic inflammation in two or more joints, not accompanied by marked deformity.

    * Discoid Rash: Red, raised patches on any part of the body.

    * Hematological Disorder: Low hemoglobin (hemolytic anemia); low white blood cell count (leukopenia); low lymphocyte count (lymphopenia); or low platelet count (thrombocytopenia). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

    * Immunologic Disorder: Commonly employed tests that reflect the immunologic disorder of lupus include: positive LE prep test, positive anti-DNA test, positive anti-Sm test, positive antiphospholipid antibodies or false positive syphilis test (VDRL).

    * Malar Rash: A redness or rash on the face that may appear in a butterfly configuration on the cheeks.

    * Neurologic Disorder: Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances that are known to cause such effects.

    * Oral Ulcers: Frequent ulcers in the nose or mouth, usually painless.

    * Photosensitivity: Reaction to sunlight, resulting in the development of, or increase in, skin rash.

    * Renal (Kidney) Disorder: Detected by excessive protein and/or cellular casts in the urine.

    * Serositis: Pleuritis (pleurisy), inflammation of the membrane that lines the inside of the chest cavity surrounding the lungs and pericarditis, inflammation of the sac or lining surrounding the heart.

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    FUNDRAISERS AND AWARENESS

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    We have several items available for sale that not only raise money for lupus but also spread awareness about this somtimes misunderstood disease. Information on these products and how you can buy them to help us spread the word about lupus is listed below.

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    OUR EVENTS

    Throughout the year we hold several events to raise money for lupus research as well as the many Quality of Life programs we offer to people with lupus and their families.

    Our Annual Walk Along with Lupus is a major event, held every year during Lupus Awareness Month in October. The Lupus Alliance..s Walk Along for Lupus is the most successful lupus walk in the country that not only supports lupus research, but the individual with lupus as well.

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  • Walk-Along for Lupus Preparing for the 16th Annual Walk-Along for Lupus on Sunday, October 18!
    Mood: excited excited
    Posted at 3:27 PM Sep 14

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SAVE THE DATE!!!

16th Annual Walk-Along for Lupus will be held on Sunday, October 18th, 2009! Eisenhower Park, Field #6, East Meadow NY.

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This years walk will feature lots of special 16th Annual Suprises including new prizes and give-a-ways!! Of course Greg-T from Z-100, the NY Islanders give-a-way van, & the USA Skateasaurus will be there as usual. Face painting, breakfast, lunch, live music, hand-outs from Grabber Warmers, and Ricola USA, free massages courtesy of ABC Wellness Center and more will round out the day!

The Walk website is up and running. Visit www.firstgiving.com/lupusliqueens and sign up for your own personalized fundraising page. Get a widget for your myspace and facebook pages, collect from your online pals and more.

Help us help those with lupus. With over 2 Million Americans suffering from lupus, everyone knows someone with lupus. Whether it be a neighbor, co-worker, family member, friend, or club member, now is your chance to help come closer to finding a cure!

Every day 44 more people are diagnosed with Lupus!

That is 2 people every hour of every day.

The Lupus Alliance of America LI/Q Affiliate is dedicated to helping those with lupus live better lives, while helping to find the cure.

The 15th Anniversary Walk-Along for Lupus is the Lupus Alliances biggest fundraiser of the year.

The Walk-Along for Lupus is the most successful lupus walk in the country that not only supports lupus research but supports the individual with lupus as well.

Last year the Walk-Along for Lupus raised over $265,000! This money helped us to expand out many direct patient services which include:

  • Support Groups

  • Kids and Teens online email group

  • Education Days and Seminars

  • Brochures, and information packets

  • Doctor Refferals

  • Community Outreach Program

  • Lending Library

  • Quarterly Newsletter

  • LupusLine a peer-to-peer counseling service

  • Up-to-Date Informative Website

  • Information and Resources on Social Security, disability, government assistance and more

  • Up-to-Date information on the latest in lupus research and lupus clinical trials

  • Financial Assistance for those with lupus in need

  • Kids program that includes scholarships, financial assistance and more

    • Lupus Statistics

    • Systemic Lupus Erythematosus is a chronic inflammatory disease of the immune system that can affect any part of the body including the skin, joints, kidneys, lungs, heart, nervous system, brain, and/or other body organs and systems. The body's immune system normally makes proteins called antibodies to protect the body against viruses and bacteria. 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," called auto-antibodies, causing the body to attack its own systems and organs.

    • Lupus is more prevalent than Sickle Cell Anemia, Cerebral Palsy, MS, Muscular Dystrophy, Leukemia and Cystic Fibrosis.

    • Over 2 million Americans have been diagnosed with Lupus. It affects 1 out of 62 women of color and 1 out of 123 Caucasian women. Lupus can occur at any age, and in either sex, although it occurs 10-15 times more frequently among adult females than among adult males after puberty.

    • More than 16,000 Americans develop lupus each year.

    • Lupus is NOT infectious, rare or cancerous.

    • Generally, no two people with systemic lupus will have identical symptoms.

    • Lupus can be difficult to diagnose. The symptoms come and go and mimic many other illnesses. Some symptoms of lupus can be transient joint and muscle pain, a rash caused by sunlight, mouth and nose sores (ulcers), low-grade fevers, hair loss, pleurisy, fatigue, anemia, seizures, memory loss, and appetite loss.

    • 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.

      • Only 10% of people with lupus will have a close relative (parent or sibling) who already has or may develop the disease. ..

    • The cause of lupus is unknown. It is likely that there is no single cause but rather a combination of genetic, environmental and possibly hormonal factors that work together to cause the disease. The exact cause may differ from person to person.

    • Doctors and professionals within the lupus community feel that the next ten years will be very important for lupus. Hopes for better diagnostic tests (right now there is no one specific test for lupus), better treatments (something to possibly replace Prednisone and it..s host of horrible side effects) and eventually even a cure!

      • Photobucket Actor James Garner (Maverick, Rockford Files) is seen above wearing one of our Life without Lupus bracelets to spread awareness about the disease. His Daughter Gigi has lupus. ..

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