 Lupus is a disease that can attack any part of the body at anytime. It affects millions of people worldwide, targeting women and people of African origin, yet it remains one of the most mysterious and misunderstood diseases. Three years after co-Directing 'Stories of Lupus' - a groundbreaking documentary about the impact of this devastating disease - Marcia Urbin Raymond takes to the road once again to catch up with people she met on her original journey. You can catch both films right here on your Community Channel.
When Marcia first met Cindy and her husband Walt, they were both struggling to cope with the dramatic changes in Cindy's physical condition as a result of both the disease and the treatment she was receiving. The treatment had caused rapid weight gain, amongst numerous other problems, but the couple were managing to deal with impact of Lupus on her health and their marriage. Since then, Cindy's condition has not improved and their relationship has come under increasing strain.
"It's been more of a patient/care-giver than husband/wife. As a matter of fact things have been real rocky and I never thought it was going to be. Part of what my vows were when I became a husband and took her as my wife. We've gone through more together in 10 years of marriage than most people go through in 50. We've gone through losing the careers; we've gone through the verge of divorce; the verge of bankruptcy and we continue to keep fighting," says Walt.
According to the programme makers, some 50% of marriages where someone is diagnosed with a chronic illness end in divorce. Michelle has three children and struggles to cope with the symptoms of her Lupus. Since the last programme Michelle's husband left her as he was unable to cope with the daily uncertainties of her illness. Just three years ago Michelle's lungs were in perfect condition but today she has just 15% lung capacity and she's discussing a lung transplant with her doctor. Michelle is unable to work and so is forced to survive on welfare payments with which she struggles to support the family. Her children care for all her health needs but they are acutely aware of her ongoing needs and the impact it's having on their lives.
 Medical insurance is a major problem for people with chronic illnesses in the US. Many find it's an uphill struggle just to get personal insurance once diagnosed with a chronic illness, and paying enough to sustain an insurance premium is virtually impossible given the amount of time when patients are unable to work. As Sharon observes, "Most of the people who have Lupus are people of colour. A lot of those people are women - black women - and I want people to know that because I'm not sure that's something that really gets across. What I know in my own struggle in terms of getting healthcare; getting medication and having that paid for; I'm lucky I have insurance but there are people who are not so lucky."
When Brian was diagnosed with Lupus at the age of 15 he began to notice how the reactions of others began to change, and rumours circulated that he was involved in drug abuse or had contracted AIDS. "My physical appearance with Lupus, due to the steroids, was really not who I was physically and a lot of people with Lupus struggle with that," he says. "Just now it's such a blessing to be able to even move or even walk. I remember there was a time when I had to crawl downstairs because my joints were so bad." Many of Brian's organs have been affected by the disease and the treatment prescribed by doctors but he was one of those fortunate enough to receive a kidney transplant, since which he got married and had a baby. He has managed to acquire an excellent level of medical insurance through the company he started, yet despite all the positive changes in his life Brian still worries about his future health and whether he will be able to watch his children grow-up.
Many Lupus sufferers find alternative therapies are helping them to cope with the various symptoms associated with the disease and avoid the devastating side-effects of medical treatments. Such alternative therapies include dramatic dietary changes, acupuncture and herbal remedies. Several of those featured in this film have found that their spiritual or religious beliefs also help them to understand and cope with the problems they are experiencing.
Don't miss this opportunity to catch up with the people featured in the first documentary 'Stories of Lupus', right here on your Community Channel.
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Last Updated ( Monday, 06 March 2006 )
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