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Natives and Lupus.

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  • Natives and Lupus.

    What is lupus?

    Lupus is a widespread and chronic (lifelong) autoimmune disease that, for unknown reasons, causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood, or skin.
    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 tissue. The immune system then makes antibodies directed against "self."
    What are the symptoms of lupus?
    Symptoms of lupus often mimic other less serious illnesses.
    Symptoms can range from mild to life-threatening.
    Lupus can go into periods where symptoms are not present, called remission.
    Although lupus can affect any part of the body, most people experience symptoms in only a few organs.
    The following lists the most common symptoms of lupus and the percentage of lupus patients who experience them.

    Symptom Percentage of Cases

    Achy joints (arthralgia)
    Frequent fevers of more than 100 degrees F.
    Arthritis (swollen joints)
    Prolonged or extreme fatigue
    Skin rashes
    Kidney involvement
    Pain in the chest on deep breathing (pleurisy)
    Butterfly-shaped rash across the cheek and nose
    Sun or light sensitivity (photosensitivity)
    Hair loss
    Abnormal blood clotting problems
    Raynaud's phenomenon (fingers turning white and/or blue in the cold)
    Mouth or nose ulcers

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    What are the different forms of lupus?
    There are several forms of lupus: discoid, systemic, drug-induced, and overlap syndrome or mixed connective tissue disease.

    Discoid (cutaneous) lupus is always limited to the skin and is identified by a rash that may appear on the face, neck and scalp. Discoid lupus accounts for approximately 10% of all cases.
    Systemic lupus is usually more severe than discoid lupus, and can affect the skin, joints, and almost any organ or system of the body, including the lungs, kidneys, heart or brain. Approximately 70% of lupus cases are systemic. In about half of these cases, a major organ will be affected.
    Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). The percentage of individuals using these drugs who develop drug-induced lupus is extremely small, and the symptoms usually fade when the medications are discontinued. Drug-induced lupus
    In approximately 10% of all lupus cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe the illness.
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    Who gets lupus?
    It is difficult to determine an exact number of lupus cases, and estimates vary widely.

    Based on the results of several nationwide telephone surveys, the Lupus Foundation of America estimates that approximately 1,500,000 Americans have a form of the disease.
    Despite the fact that lupus can affect men and women of all ages, lupus occurs 10 to 15 times more frequently among adult females than adult males.
    Lupus develops most often between ages 15 and 44.
    Lupus is two to three times more common among African Americans, Hispanics, Asians, and Native Americans.
    Only 10 percent of people with lupus will have a close relative (parent or sibling) who already has lupus or may develop lupus.
    Only about 5 percent of the children born to individuals with lupus will develop the illness.
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    What causes lupus?

    Lupus is NOT infectious, rare, or cancerous or AIDS
    Researchers do not know what causes lupus.
    While scientists believe there is a genetic predisposition to the disease, it is known that environmental factors also play a role in triggering the disease.
    Some of the factors that may trigger lupus include infections, antibiotics, ultraviolet light, extreme stress, certain drugs, and hormones.
    Hormonal factors may explain why lupus occurs more frequently in females than in males.
    How is lupus diagnosed?
    Because many lupus symptoms mimic other illnesses, are sometimes vague, and may come and go, lupus can be difficult to diagnose.
    Diagnosis is usually made by a careful review of:

    a person's entire medical history,
    physical examination, coupled with
    an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.
    Currently, there is no single laboratory test that can determine whether a person has lupus or not. It may take months or even years for doctors to piece together evolving symptoms and accurately diagnose lupus.

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    How is lupus treated?
    For the vast majority of people with lupus, effective treatment can minimize symptoms, reduce inflammation, and maintain normal body functions.
    Treatment approaches are based on the specific needs and symptoms of each person.
    Because the characteristics and course of lupus may vary significantly among individuals, it is important to emphasize that a thorough medical evaluation and ongoing medical supervision are essential to ensure proper diagnosis and treatment.
    Medications are often prescribed for people with lupus, depending on which organs are involved, and the severity of involvement.
    Commonly prescribed medications include
    nonsteroidal anti-inflammatory drugs (NSAIDs),
    antimalarials, and
    immunomodulating drugs.
    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 non-organ threatening lupus can look forward to a normal lifespan.

    REACH: Research, Education, Awareness, Communication, and Healthcare

    Your support of this measure will help ensure that our nation is taking the steps necessary to reduce and prevent suffering from this debilitating and life-threatening autoimmune disease.
    Lupus is a serious, complex, debilitating autoimmune disease that can cause inflammation and tissue damage to virtually any organ system in the body, including the skin, joints, other connective tissue, blood and blood vessels, heart, lungs, kidney and brain. It affects women nine times more often than men, and 80 percent of newly diagnosed cases of lupus develop among women of child-bearing age.

    Of serious concern is that this disease disproportionately affects women of color – it is two to three times more common among African Americans, Hispanics, Asians and Native Americans and is generally more prevalent in minority populations – a health disparity that remains unexplained. It has been almost 40 years since the FDA has approved a new drug specifically to treat lupus. Nearly half of all people with lupus suffer four or more years and visit three or more doctors before receiving a diagnosis.

    Lupus is a disease that is disabling and cruel, and necessitates a coordinated national response to ensure that we are doing everything we can to identify the causes, improve diagnosis and care, and find a cure.

    Urge Your U.S. Senators to Co-sponsor S.756, Lupus REACH Amendments Act of 2005
    New Legislation Will Enhance Lupus Research and Improve Public Awareness and Professional Education

    The Lupus REACH Amendments of 2005 (S.756) was introduced in the United States Senate by Senator Robert Bennett (R-UT). REACH is an acronym for Research, Education, Awareness, Communication, and Healthcare.

    The REACH Amendments enhance federal biomedical research on lupus, including urgently needed epidemiology research, and authorizes programs to increase public awareness and improve public and professional education about lupus.

    In addition to Senator Bennett, Senators Orin Hatch (R-UT), Mary Landrieu (D-LA), Patty Murray (D-WA), and Richard Shelby (R-AL) have signed on as co-sponsors of S.756. We need every member of the United States Senate to become a co-sponsor of this important federal legislation.

    If your Senators have not already signed onto S.756, please contact them immediately and urge them to become a co-sponsor of the Lupus REACH Amendments of 2005. To send an e-mail message to your Senators copy and paste the URL below into your web browser:

    Please urge your family and friends to join with you in this effort to pass important federal legislation that will enhance research on lupus and improve public and professional awareness and understanding of lupus.

    Other Ways You Can Help

    1. Make an Appointment with Your Senators – Contact the nearest district office of your two U.S. Senators and make an appointment to meet with the Senators the next time they will be in the area. You also can make an appointment to speak with the staff member who handles health issues for the Senators. Urge each Senator to become a co-sponsor of S.756, the Lupus REACH Amendments of 2005.

    2. Attend a Town Meeting – Check with your Senators’ nearest district offices to learn when the Senators will hold their next town meetings. Ask your family and friends to join you at the meetings to urge the Senators to cosponsor S.756.

    We need everyone with lupus or who knows someone with lupus to join in this nationwide effort to secure passage of the Lupus REACH Amendments of 2005. Take Action TODAY!

    go to for more information.

  • #2
    good info. i got dianosed with Lupus about 15 years ago, but my doctor and i think i actually started to have symptoms when i about 7 years. because i am careful abut sun exposure and the like, my health is good.


    • #3
      thank you. what type were you diagnosed with. i was diagnosed with systemic lupus a little over 3 years ago, but have been having symptoms sence i was 10. not doing so goon on my end. been having a lot of heart problems and such. like a couple of weeks a go for instance... i passed out in my kitchen (my heart skipped a few beats and my lungs tightened up and made it almost impossible to breathe). i don't know how long i was out, but i woke up to my 3 year old son blowing air in my mouth, crying, screaming at me, slapping me...doing all he could to wake up his mommy.


      • #4

        i am what they classified as overla lupus. i am mainly cutaneous lupus, but have other symptoms. i get the rash if i am in the sun too long, but i have the achiness in the joints and muscles.


        • #5
          would you help?

          well...are you up for helping me get the reach admendment passed and with spreading awareness?


          • #6
            Originally posted by littlej
            well...are you up for helping me get the reach admendment passed and with spreading awareness?
            sure thing!


            • #7
              thank you so much


              • #8
                just let me know and i will do what i can!


                • #9
                  here's a start

         can start by going to and clicking on the action alert and sending your state sen. an email or writing a letter. and pass on the information and try to get others to do the same. that alone is alot.


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