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FAQ about Lupus Support Group in Korea

What is LUPUS?
Is it deadly?
Is it only Women's disease?
Is it possible for children before the puberty to have LUPUS?
How many LUPUS patients are in Korea?
What are the symptoms?
Current method of treatment and adverse effect?
I think I have LUPUS, what can I do?
To whom should a person go for a diagnosis of LUPUS?
What kind of medical tests are available to diagnose LUPUS?
I am with LUPUS, can I have a baby?
How can I get help and information about LUPUS?
Where should I go and seek medical help in Korea?
How can I support KLSG?

  1. What is Lupus?

    Lupus is an autoimmune disease. It occurs when an unknown trigger causes your immune system to respond as if parts of your body are foreign substances. Your body directs antibodies and white cells against itself, causing inflammation and injury to certain tissues and organs. Lupus, which is also considered a rheumatic (arthritic) disease, can affect the joints, muscles, skin, kidneys, nervous system, lungs and heart.

  2. Is it deadly ?

    In the 1950s, if you were diagnosed with lupus, the odds were 50-50 you'd die within five years. Diagnosed today, you'd have an 80 percent to 90 percent chance of living a normal life span. Greater awareness among physicians, development of more sensitive diagnostic tests and improvements in treatment are responsible for this improved prognosis. But lupus' variable and sometimes vague manifestations still make this chronic inflammatory disease difficult to diagnose.

  3. Is it only Women's disease?

    No. Lupus affects women eight to ten times more frequently than men and often first appears in women of child-bearing years (ages 18 to 45).Women of color (African-American, Native American, Asian and Hispanic) are affected more often than Caucasian women. Lupus also can affect children, the elderly and men.

  4. Is it possible for children before the puberty to have LUPUS?

    Yes. Systemic lupus erythematosus (SLE) is rare in children under 5 years. It more commonly affects teenagers. As you probably know, SLE can affect many body systems and is extremely variable in severity. Rashes, kidney inflammation (nephritis) and joint inflammation are the most likely problems seen in children with SLE. Because SLE in children is an uncommon condition, your pediatrician may suggest an evaluation by a rheumatologist. Consultation with additional specialists may be warranted, depending on how the child is affected by SLE.

  5. How many LUPUS patients are in Korea?

    There are no statistical data available. However, KLSG estimates there are about 150,000 women and men suffering from the disease. However, there are only 100,000 that have been recognized/diagnosed as patient. Other 50 thousand are either not treated or not diagnosed. It is one of the KLSG's mission to help patients and families to find proper medical treatment and to assist thereafter.

  6. What are the symptoms?

    Lupus appears in one of two forms: Discoid lupus erythematosus (er-uh-the-muh-to-sus) which can be chronic and may cause a red, scaly rash, usually on the face, and systemic lupus erythematosus (SLE or lupus). SLE is the most common and severe form of lupus (and the focus of this article). It can affect many organs in your body. Usually, though, it affects only a few organ systems.Lupus is often difficult to diagnose because manifestations vary from person to person and can fluctuate with time. Nearly all people with lupus experience changes in disease activity. At times, the disease may flare; at other times, there may be no evidence of lupus at all (remission). Fever, weight loss and fatigue may be among the first signs of the illness. A skin rash may develop on the face, neck or arms, especially after exposure to the sun. This rash may involve the nose and cheeks and appear as a butterfly-shaped rash. Ulcers, usually painless, can occur in the mouth or nose. Painful swelling of the joints and prolonged stiffness in the morning can occur. Inflammation of the surface of some organs (serositis) such as the heart and lungs can cause painful breathing or shortness of breath. The kidneys can be affected without producing symptoms, although swelling (edema) of the legs can occur. Lupus affecting the kidneys may cause protein and blood in the urine and high blood pressure. People with lupus may experience depression or difficulty in concentrating, either due to the disease itself or as a reaction to living with a chronic disease. Rarely, seizures can occur.

  7. Current method of treatment and adverse effect?

    Treatment of SLE depends on which organs are affected and the severity of involvement. Because lupus may assume many forms, finding the most effective treatment may take time. Sunscreens with an SPF of at least 15 and protection from ultraviolet rays from the sun or tanning beds are recommended even if the skin is not involved, since ultraviolet light can trigger a flare. Aspirin or nonsteroidal anti-inflammatory medications (NSAIDs) may be recommended for joint manifestations. Anti-malarial medications may be useful for treating skin and joint problems and serositis and may prevent flares of the disease. (There is no known relationship between lupus and malaria; no one knows why anti-malarial drugs work on lupus.)

    Corticosteroids are frequently used; the dosage is dependent on the organs involved and the severity of involvement. Side effects of steroid use include weight gain, puffiness in your face, easy bruising, thinning of bones, high blood pressure, diabetes and increased risk of infection. Immunosuppressive medications such as azathioprine (Imuran) and cyclophosphamide (Cytoxan) may be used to treat SLE, especially if the kidneys are involved. Other such medications are methotrexate, chlorambucil and cyclosporine. These medications suppress the immune system even more than corticosteroids. Your doctor will generally prescribe them if corticosteroids aren't effective or in conjunction with a lower dose of corticosteroids (to reduce side effects). But if you use these drugs, they may cause anemia and a low blood cell count. They may also increase your risk for infection and cancer. Sometimes, even with the use of corticosteroids and immunosuppressive drugs, the kidneys fail. Kidney dialysis may be necessary; if failure is permanent, a transplant may be considered.

  8. I think I have lupus, what can I do ?

    When someone has many symptoms and signs of lupus and has positive tests for lupus, physicians have little problem making a correct diagnosis and initiating treatment. However, a more common problem occurs when an individual has vague, seemingly unrelated symptoms of achy joints, fever, fatigue, or pains. Some doctors may even think the person is neurotic. Others may try different drugs in the hope of suppressing the symptoms. Fortunately, with growing awareness of lupus, an increasing number of physicians will consider the possibility of lupus in initial diagnosis. A patient can help the doctor by being open and honest. A healthy dialogue between patient and doctor results in better medical care, not only for people with lupus, but for anyone seeking medical treatment.

  9. To whom should a person go for a diagnosis of lupus?

    Most individuals usually seek the help of their family doctor first, and this is often sufficient. However, when unresolved questions arise or complications develop, another opinion from a specialist may be advisable. The choice of specialist depends on the problem. For example, you would see a nephrologist for a kidney problem or a dermatologist for a skin problem. Most often, a rheumatologist or clinical immunologist specializing in lupus is recommended. Referrals can be made through doctor. Please contact KLSG for more information and for initial consultation.

  10. What kind of medical tests are available to diagnose Lupus?

    Laboratory tests are most useful when one remembers the following information. If an individual has signs and symptoms supporting the diagnosis of lupus (e.g., at least four of the American Rheumatism Association criteria), a positive ANA confirms the diagnosis and no further testing is necessary. If a person has only two or three of the American Rheumatism Association criteria, then a positive ANA supports the diagnosis. In these cases, unless more specific tests are positive (e.g., anti-DNA, anti-Sm, anti-Ro) the diagnosis of lupus is uncertain until more clinical findings develop or other more specific blood tests, as cited above, become positive. For more information, please refer to the "Lupus: Testing" section of this document.

  11. I am with LUPUS, can I have a baby?

    Yes you can, but you should consult with your doctors, and treatment options and possible adverse effects and risks should be carefully accessed.

  12. How can I get help and information about LUPUS?

    For more informations about lupus in Korea, please contact:

    LUISA
    Phone:    82-02-2285-4546
    Address: Byuk-ssan Buld. 11FL.
    22-1 Ssang-Ling Dong
    Choong Ku, Seoul, Korea

  13. Where should I go and seek medical help in Korea?

    Unfortunately, there are limited numbers of medical facilities in Korea that provide exclusive service to lupus patients. KLSG tries to set a milestone in Korean medical community to develop intensive research and diagnostic capability. Currently, Han-Yang university affiliated hospital provides the medical service exclusively for the LUPUS patients.

    For more Info, contact LUISA at webmaster@luisa.or.kr

  14. How can I support KLSG?

    There are numerous ways to help KLSG activity. KLSG graciously accepts any volunteer and financial support.

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