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The connection of SLE to Amerindian Lineage

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    The National Native American Lupus Project: A New Frontier in the Study of Lupus An article by Carisa Cooney, Recruiter -- Published in Lupus Linkage
    Message 1 of 1 , Jan 28, 2007
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      The National Native

      American Lupus Project:

      A New Frontier in

      the Study of Lupus

      An article by Carisa Cooney, Recruiter --
      Published in Lupus Linkage, vol VI:
      2001 & OMRF Findings Fall 2001

      The Lupus Genetic Linkage Study is pleased
      to announce the advent of
      The National
      Native American Lupus Project

      This project is a newly developing venture
      between scientists, geneticists and
      anthropologists both at the University
      of Oklahoma and the Oklahoma Medical
      Research Foundation, and Native American
      Tribal Communities in Oklahoma as
      well as across the United States.

      Funded by the National Institutes of Health (NIH),
      the project has both short- and long-term goals.

      In the short term the NNALP has already begun
      developing a culturally sensitive outreach and
      program regarding Lupus and its
      effect on Native American peoples

      This immediate effort hopes
      to better identify
      the epidemiology and incidence of Lupus
      in indigenous communities, contributing to
      the long-term health needs
      of those communities.

      Like some other indigenous populations of the world, the
      incidence of Lupus in Native Americans
      , though
      suspected of being high, is not precisely known.

      It is, however, thought that in some tribes,
      occurs as much as 10 times more often
      than in the European American population

      This incidence is more than
      twice the incidence
      of that in the
      African-American population.

      As many of you already know, finding the genes that
      predispose to Lupus
      is an extremely complicated task.

      There are population structure issues that make
      studying the genetics of Native Americans unique and
      possibly powerfully informative for finding Lupus genes.

      These are all valuable reasons why researchers and
      geneticists at the Oklahoma Medical Research
      Foundation and the Lupus Genetic Linkage Study
      have become particularly interested in
      Systemic Lupus Erythematosus and Lupus
      genetics in Native-American peoples.

      The National Native American Lupus Project
      seeks to find members willing to participate in the
      search for the genetic causes of Systemic Lupus.

      Researchers are speaking with leaders and members
      of different tribal groups to exchange information
      and ideas about the Project, determine how best
      to conduct the research with specific groups
      and to establish complimentary goals.

      If you are Native American and have a family update
      as to other family members who may have lupus, or
      know of a Native American family with Lupus, please
      give them this article and tell them about the project.

      Native Americans interested in additional information
      or participating should feel free to call
      Debi Colbert, Reba
      or another recruiter Toll-Free at 1-888-655-8787

      Be sure to ask for the National
      Native American Lupus Project!


      Interested in Participating?

      See what
      Study Participation involves.
      Email a Recruiter at
      or call Toll-Free (in the USA, Canada, PR, VI)
      1-888-655-8787 (1-888-OK-LUPUS)
      825 NE 13TH STREET MAILSTOP #5,
      OKLAHOMA CITY, OK 73104

      SOURCE:  http://lupus.omrf.org/?page=NNALP


      Systemic Lupus Erythematosus (SLE) is a chronic
      (i.e. there is no known cure)
      Auto-Immune disorder (i.e. a disorder in which
      the immune system begins to attack the persons
      body) which may affect many organ systems
      including the skin, joints and internal organs.

      The disease may be mild, severe and life-threatening.

      Native-Americans and African-Americans and
      Asians appear to be disproportionately affected.


      • Appearance of a facial 'Malar Rash' - a "butterfly"-shaped
        rash over the cheeks and nose; becomes worse in sunlight
        and fluorescent light and may also become widespread .
      • An Odd Sensitivity to Sunlight and / or Fluorescent light
        (the types of light which emit ultraviolet rays)
      • Skin color or texture is
      • patchy / blotchy / splotchy
      • Red spots appear on skin (often looks like severe acne or rosacea)
      • Spots / patches of hyper-pigmentation appear on skin
      • Unexplained Hair Loss
      • Fingers and toes change color (ex. become
        pale) when exposed to slight pressure or cold
      • Numbness and Tingling of Skin / Extremities
      • Joint Pain, Swelling and other symptoms of Arthritis
      • Muscle Aches
      • General discomfort, uneasiness or ill feeling (malaise)
      • Fever
      • Fatigue
      • Swollen glands
      • Nausea / Vomiting
      • Abdominal Pain
      • Pleurisy (Cjest Pain)
      • Pleural Effusions
      • Pleuritis
      • Inflammation of skin and / or internal organs
        (ex. kidneys, pancreas, lungs, heart, brain, etc.)
      • Seizures
      • Visual disturbance
      • Blood disorders, including blood clots

        Systemic lupus erythematosus
      • Coughing up blood
      • Difficulty in Swallowing
      • Mouth Sores
      • Nose Bleeds


      THE 'ANA'  TEST

      (The Anti-Nuclear Antibocy Test:
      the test given for diagnosis of Lupus)

      The ANA test is used to help diagnose systemic lupus
      erythematosus (SLE)
      and drug-induced lupus
      and many other autoimmune diseases.

      Because the ANA test result may be positive
      in a number of these other diseases, additional
      testing can help to establish a diagnosis of SLE.
      No single lab test can tell if you have Lupus.

      Many lupus symptoms imitate symptoms
      of other diseases and often come and go.
      Your primary care doctor or rheumatologist will use your
      medical history, a physical exam, and many routine
      as well as special tests to rule out other diseases.

      Many physicians also use the American College of
      Rheumatology's "Eleven Criteria of Lupus"

      to aid in the diagnosis of Lupus.

      The criteria include symptoms as well as specific
      laboratory findings that provide information about
      the functioning of a person's immune system.

      In most cases, the diagnosis of lupus is made when
      four or more of the criteria have occurred at some time.

      The "Eleven Criteria"

       for SLE / LUPUS

      1.     Malar rash:
      A butterfly-shaped rash across cheeks and nose

      2.     Discoid (skin) rash:
      Raised red patches found on the skin

      3.       Photosensitivity:
      A red or brown skin rash aappearing
      as a result of unusual reaction to
      sunlight and / or fluorescent lighting

      4.       Mouth or nose ulcers (usually painless)

      5.       Non-erosive Arthritis
      (the type wherein the bones
      around joints are not destroyed):
      in 2 or more joints with
      tenderness, swelling, or effusion

      6.    Cardio-pulmonary involvement:
      Inflammation of the lining around the
      heart (pericarditis) and/or lungs (pleuritis)

      7.   Neurologic disorder:
      Seizures and/or cognitive dysfunction

      8.       Renal (kidney) disorder:
      Excessive protein in the urine,
      or cellular casts in the urine

      9.       Hematologic (blood) disorder:
      hemolytic anemia, low white blood
      cell count, or low platelet count

      10.   Immunologic disorder:
      Antibodies to double stranded DNA,
      antibodies to Sm, or antibodies to cardiolipin

      11.   Anti-Nuclear Antibodies (ANA):
      positive test in absence of drugs known to induce it

      SOURCE:  http://www.lupusla.org/diagnosis.php


      What causes Lupus?

      The exact cause of Lupus is unknown.
      It is likely to be due to a combination of factors.
      For example, a person's genetic make-up
      and exposure to certain unknown trigger
      factors may provide the right environment
      in which Lupus can develop.

      Is it hereditary?

      We suspect (but do not have scientific proof)
      that people inherit something from their parents
      that predisposes them to develop Lupus.
      They are not necessarily pre-destined to develop
      Lupus, but they may be more susceptible.
      At the present time, there are no genetic tests to
      determine who is susceptible and who is not.

      Where is genetic research being done?

      Several researchers are doing Linkage
      Studies to evaluate families in which
      more than one member has Lupus.
      They hope to be able to identify a gene
      or genes that are responsible for Lupus.
      Undoubtedly the resources of all of these
      groups will eventually be pooled, but there
      is much to be gained from the current
      phase of multiple independent efforts.
      Participation in multiple studies is encouraged.
      More are listed in the Clinical Trials section.
      If you are interested in participating or would
      like information, visit the
      LFA Research
      page and click on "Clinical Trials,"
      and/or contact any of the following:

      Lupus Multiplex Registry & Repository

      Oklahoma Medical Research Foundation
      825 NE 13th Street, MS #5
      Oklahoma City, OK 73104
      Call Carisa Cooney, Kurt Downing, Jessica Lombard,
      or another Recruiter at 1-888-655-8787
      (1-888-OK-LUPUS) or (405) 271-7479

      National Native American Lupus Project

      This project seeks to find members of Tribal
      Communities willing to participate in the search
      for the genetic causes of Systemic Lupus.
      Researchers are speaking with leaders and
      members of different tribal groups to exchange
      information and ideas about the Project,
      determine how best to conduct the
      research with specific groups, and
      establish complementary goals.

      If you are Native American and have family
      members who may have Lupus, or know of a
      Native American family with Lupus, please call
      the NNALP at the Oklahoma Medical Research
      Foundation toll free at 1-888-655-8787.

      African-American Families with Lupus

      Scientists at the Oklahoma Medical Research
      Foundation are seeking African-American
      families to participate in studies of Systemic
      Lupus Erythematosus call the Recruiter at
      Oklahoma Medical Research Foundation
      1-888-65 LUPUS (1-888-655-8787).

      Lupus Families

      Families with at least two members who are related
      by blood and have been diagnosed with Lupus should
      call the recruiter at the Oklahoma Medical Research
      Foundation at
      : 1-888-65 LUPUS (1-888-655-8787)
      Families with three or more affected members
      (siblings, cousins, aunts, uncles, grandparents,
      etc.) would be exceptionally helpful.

      Genetics of SLE - Family Study

      Division of Rheumatology
      University of Minnesota
      14-154 Moos Tower
      515 E. Delaware St.
      Minneapolis, MN 55455
      Tel: 1-800-51-LUPUS (1-800-515-8787)

      Dr. Jane E. Salmon
      Hospital for Special Surgery
      Weill Medical College of Cornell University
      New York, NY
      Tel: (212) 606-1171

      Betty P. Tsao, Ph.D.
      Division of Rheumatology
      Rehabilitation Center 32-59
      1000 Veteran Avenue
      UCLA School of Medicine
      Los Angeles, CA 90095-1670

      The following investigators are participating in
      the multi-center Genetics PROFILE Study and
      are interested in people with Lupus and their
      biological parents who live in the geographic
      areas of Birmingham, Alabama; Baltimore,
      Maryland; Chicago, Illinois and Houston, Texas.

      Dr. Graciela Alarcon
      University of Alabama at Birmingham
      Birmingham, AL
      (205) 934-2799

      Dr. Robert Kimberly
      University of Alabama at Birmingham
      Birmingham, AL
      (205) 934-5306

      Dr. Michelle Petri
      Johns Hopkins University Hospital
      Baltimore, MD
      (410) 614-1839

      Dr. Rosalind Ramsey-Goldman
      Northwestern University
      Chicago, IL
      (312) 503-8197

      Dr. John Reveille
      University of Texas-Houston
      Houston, TX
      (713) 500-6900

      What can trigger Lupus?

      It is believed that certain things may trigger
      the onset of Lupus or cause Lupus to flare.

      Trigger factors include:

      ----- Ultra-Violet (UV) Light
      (ex. sunlight, fluorescent light, halogen light, etc.)
      ----- Severe or Chronic Stress
      ----- Certain prescription drugs
      ----- Infection
      ----- Certain Antibiotics
      ----- Hormones

      Are there any medications that
      people with Lupus should avoid?

      Your doctor should watch for allergic reactions to
      medications, and watch for any connection between
      flares and estrogen or oral contraceptives.

      People with Lupus should be especially
      careful if they are prescribed Sulfa Antibiotics.

      These medications (Bactrim, Gantrisin, Septra) are often
      prescribed for urinary tract infections and may cause
      an increase in sun sensitivity and
      lower blood counts resulting in disease flares.

      There are also sulfa diuretics (water pills)
      such as Dyazide and diabetic drugs
      containing Sulfa
      such as Aldactone.

      Is Lupus related to pollution
      or toxic chemicals?

      We do not know.
      The cause of Lupus, and many other
      autoimmune diseases, remains unknown.

      The respective roles of genetic and environmental
      factors in triggering Lupus remain to be determined.

      The National Institutes of Health (NIH), the principal
      biomedical research agency of the United States
      Government established the National Institute of
      Environmental Health Sciences (NIEHS) to
      study issues related to environmental health.

      A meeting in September of 1998 at Research
      Triangle Institute (RTI) in Durham, NC organized
      by NIEHS, looked at autoimmunity and the
      environment and specifically Lupus.
      A review of the discussion was published in

      the medical journal, Arthritis and Rheumatism
      (1998 Oct; 41(10): 1714-24) in an article titled:
      "Hormonal, Environmental, and Infectious
      Risk Factors for Developing Systemic Lupus
      Erythematosus" by Cooper GS, Dooley MA,
      Treadwell EL, St Clair EW, Parks CG, Gilkeson
      GS. The National Institute of Environmental Health
      Sciences (NIEHS) website:

      Lupus Foundation of America , Inc.


      If You Are Diagosed With Lupus

      For many Lupus patients, following their doctors' instructions
      very carefully is the first step in the right direction.

      While lupus can be disruptive to everyday life and
      even life-threatening, the good news is that, with the
      correct medication and a healthy lifestyle, many
      Lupus patients can enjoy an improved quality of life.

      SOURCE:  http://www.lupusla.org/diagnosis.php

      Related Links:

      http://www.niwhrc.org/uploads/health/Lupus Study Summary.doc 

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