SYSTEMIC LUPUS ERYTHEMATOSUS—is a chronic and often disabling autoimmune disease. Estimates indicate that more than 1.5 million Americans have LUPUS. Around the globe there are many more cases of LUPUS being diagnosed. I am still trying to find out the total number of LUPUS patients in the UK. Lupus UK has a total of 6000 members but there is an exceedingly higher number who have either been diagnosed or waiting for answers to conditions resembling the disease. Most are young women of childbearing age, and suffer from such symptoms as intense fatigue and exhaustion, JOINT PAINS, thinking and memory problems, and skin rashes. No two cases of lupus are alike. Some people develop kidney problems, for example, while others get premature HEART DISEASE and others still suffer from strokes or develop lung inflammation. In 2011, the first lupus therapy in 50 years was approved with Benlysta (belimumab) Co-developed with Human Genome Sciences and GlaxoSmithKline, Belimumab is an antibody that interferes with the immune systems assault by binding to and inhibiting a protein called the B-lymphocyte stimulator (BLyS). Blocking BLyS is thought to cause the immune systems antibody-producing B cells to self-destruct, thereby reducing the bodys ability to attack its own tissues. LUPUS Research Institute and other scientists continue to investigate LUPUS, and are coming closer to finding answers. They’re not only asking basic questions about why lupus happens—why the immune system becomes hyperactive and turns on the body it is supposed to defend from harm—but they’re asking things like… how does lupus happen? why do so many more women than men get lupus? why does lupus sometimes flare, and sometimes go into remission? why do so many more women of color develop lupus—and suffer such severe complications and a higher risk of death from the disease? what can be done to speed along CLINICAL TRIALS and find new treatments? The Outlook for People with Lupus While scientifically still a “black box,” the pace and scope of recent lupus discoveries is heartening. A surge in better diagnostic techniques and treatment methods also has led to more effective management of the disease and its complications. Just 20 years ago, only 40 percent of people with lupus were expected to live more than 3 years following a diagnosis. Now, with earlier diagnosis, the latest therapies, and careful monitoring, most people with lupus can look forward to a normal lifespan. Skills to Cultivate Think of educating yourself about lupus as an empowerment skill—one of several that people with a chronic disease consistently find make a big difference in their lives. Other valuable empowerments skills include the ability to: * Pace yourself, a quality that has to do with knowing your limits. * Communicate your needs to those who care for you. * Practice patience to ride out the trying times. * Organize your medical records and visits to physicians. * Prioritize your responsibilities in life (rest, exercise, work, family). * Cultivate a sense of humor to help you through the rough spots. Lupus Org UK Have humor in your life, try and do exciting activities and have some Me time. Dont be afraid to ask for help or company. Be who you want to be, and rest when you need to. Big hug
Posted on: Thu, 13 Nov 2014 21:26:55 +0000
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