 Lupus is a disease affecting millions of people worldwide, particularly women and people of African descent, yet it remains clouded in mystery and misunderstanding.
Karin Mellberg and Marcia Urbin Raymond both suffer from the effects of Lupus - a mysterious disease affecting millions of people worldwide but still widely misunderstood and under-reported. In this exceptional documentary, they journey throughout the United States to meet others who are struggling to cope with the symptoms of Lupus and its impact on their lives and relationships.
More than two million people have been diagnosed with Lupus in the United States alone - however awareness of the disease, its causes and symptoms has barely risen over the years and those diagnosed still suffer from misunderstandings over their condition. Just like the AIDS virus, Lupus effects the human immune system, but whilst AIDS reduces the immune systems responses to infections, Lupus actually increases these responses prompting the body to actually attack itself.
 In this groundbreaking documentary, Karin and Marcia take to the road with a mission to put names and faces to those people whose struggle they share, and to find some answers to the persistent questions surrounding this mysterious disease. During a series of in-depth interviews with several patients, their families and carers we begin to understand the devastating impact of this disease and the variety of measures they pursue to mitigate its effects.
Lupus has been known about for thousands of years but it's only now that we're beginning to unlock its secrets. We now know that Lupus has a genetic basis that predisposes certain people to the disease and this gene or genes are hereditary, meaning the disease can be passed through the generations from parents to children. Unlike the AIDS virus, Lupus is not contagious and can miss several generations as its onset relies on an external or internal 'trigger'. Such triggers can include sunlight, cigarette smoke, a virus, bacteria or a drug reaction; it can be physical stress or emotional trauma or simply the chemicals used in a tattoo. Symptoms can be as minor as a skin rash or as devastating as major organ failure.
Sharon was working as a professor when she was diagnosed with Lupus in 1989. She recalls, "When I first was diagnosed with the Lupus, my first thought was 'Oh, I wish it was cancer'. Now people would be surprised with that, but I thought with cancer there was some hope that you can cure it in some ways, depending on the kind of cancer. Whereas all I knew about Lupus at that time was that people died within five years and there was no cure." As her illness progressed, large areas of her memory began to fail her and she realised that subjects she had previously taught to her students were now a mystery.
One of the major characteristics of Lupus is its predominance amongst women (some 90% of all patients are women) and it's disproportionate prevalence among people of African descent. Beyond the impact on patient's physical mobility, Lupus often causes conditions similar in appearance to those associated with AIDS, which has led to many patients being stigmatised and isolated from their communities.
Side-effects from the medicines used to treat Lupus often lead to more and more serious health problems as many of the chemical-based drugs attack both good and bad cells in a patient's body. In fact complications associated with the treatment of Lupus is the second most common cause of death in the disease. Cindy has taken high doses of immuno-suppressive drugs to keep her over-active immune system in check, but this in turn has left her vulnerable to infections and complications caused by the drugs themselves including dramatic weight gain. Since being diagnosed, Cindy has suffered from ulcers, glaucoma, high blood pressure and depression. She takes 57 pills every day.
Don't miss 'Stories of Lupus' for a unique opportunity to learn about this devastating disease that affects millions of people across the world yet remains clouded in mystery and misunderstanding. You can watch 'Stories of Lupus' right here on your Community Channel.
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Last Updated ( Monday, 06 March 2006 )
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