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Thursday, April 26, 2012

May is Lupus Awareness Month

The month of May is Lupus Awareness month, awareness about a chronic disease that affects at least 1.5 million Americans alone, 5 million worldwide, yet the majority of people know little to nothing about it. As a means to get the word out, below are a few options:
the usual textbook explanation, links to wonderful books, the link to purchase a touching movie, and a video to view on YouTube.
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
  • Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
  • Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
 Here are links to three very informative books:
Positive Options for Living with Lupus
Lupus Alternative Therapies That Work
The Sun is my Enemy

Writer/director Mark von Sternberg and producer John Casey wrote their movie, Love Simple, as a means of bringing attention to a disease that is anything but simple. Set in Brooklyn, N.Y., Mark chose to have his female lead portray a young woman in love, a young woman who also happens to have lupus. A serious autoimmune disease, lupus is so complicated that the FDA has only approved one drug to treat the disease in the last 50 years. The film takes the viewer into the lives of people struggling to seek out a future while having to deal with this haunting presence constantly interfering with their plans for a normal life.

Mark received his introduction to lupus when he was working in the nursing office in a Brooklyn, NY hospital. While there in 2003, he learned about a young patient with lupus. To his horror, she died. Fresh out of school, he wondered how he could not have heard of such a serious illness that could take the life of someone so young. He began to research lupus, discovering a mysterious disease that causes the immune system to turn from protector to betrayer. He also learned lupus causes a multitude of problems that vary from patient to patient, including some that can be managed and some that are life threatening.

Click here for a personal perspective on how this condition affects one's present life and outlook for the future for herself and her family. Very touching piece of work.