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Living Well with Lupus Symposium Offers Patient Education

The Living with Lupus symposium will be held on Saturday, April 24 from 8am until 3 pm at the Avalon Manor, 3550 E US Hwy 30, in Merrillville. lupus-foundation-of-americaThe program, offered by the Lupus Foundation of America, Indiana Chapter (LFA) is designed for people with lupus, their friends and families and area healthcare providers.

Dr. Heather Gillespie, Rheumatologist will present “Lupus: Update on Research and Treatment” at the symposium. It has been more than 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus. Dr. Gillespie is on the Medical Advisory Board of the LFA.

Dr. Tim Taber will present Kidney Disease and Transplantation. Dr. Tim Taber practices Nephrology and Internal Medicine in Indianapolis. It is estimated that as many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require medical evaluation and treatment. Because there are so few symptoms of kidney disease, significant damage to kidneys can happen before a patient is diagnosed with lupus.

Sara Gorman will be featured at the symposium. She is the author of “Despite Lupus: How to Live Well with a Chronic Illness.” Gorman was diagnosed in January of 2001 with systemic lupus. She was 26 years old, had been married less than six weeks, and was at a high point in her career in television production. Determined not to let a chronic illness dictate her plans for the future, she refused to admit that her busy lifestyle and indomitable attitude were hindering her chances for a long, productive life. After four years of running her body into the ground, she realized she was fighting life, instead of living it. Thus, she made it her top priority to start living well, despite lupus. The steps she took to regain the health and wellness she’d lost are outlined in her book. Quitting her job, postponing plans for pregnancy, and cutting off her hair (or what she had left) are just a few of the monumental, courageous steps she took to reach her goal of living well, despite lupus.

Dr. Janice Zunich, Director of Genetics Center at the Indiana University School of Medicine Northwest will present “Pregnancy and Lupus.” Since lupus primarily affects young women, pregnancy often becomes a crucial question. Years ago, all medical texts said that women with lupus could not have children. Currently, more than 50 percent of all lupus pregnancies are completely normal. Twenty-five percent of women with lupus deliver normal babies prematurely. Fetal loss accounts for less than 20 percent. It is important to note that although many lupus pregnancies will be completely normal, all lupus pregnancies should be considered "high risk."

Karen Fontaine will discuss the value of alternative methods in dealing with chronic disease. Fontaine, R.N., M.S.N., is Professor of Nursing at Purdue University Calumet, where she has been teaching for 20 years. She is the author of several books.

Tanaz Bamboat will present “Laughter Yoga: A Unique Way to Manage Stress.” Bamboat is a certified Instructor for Laughter Yoga, a new concept in body-mind medicine. She was trained by her Gurus Dr. Madan and Madhuri Kataria from India. Tanaz has given seminars at hospitals, senior communities, health clubs, schools, libraries and parks and has offered training sessions in various different settings. Laughter Yoga has brought great joy in her own life and has allowed her to take control of her depression. Tanaz's goal is to spread inner joy and peace through laughter.

The registration fee for LFA members is $15 and $20 for non-members. The cost is $5 to bring an additional family member or friend. Nursing and social work students may register for a reduced fee of $10. A limited number of “Living with Lupus” scholarships are available for lupus patients that are unable to pay the registration fee and would like to attend the event.

Registration fee includes a continental breakfast, lunch and a complimentary tote bag filled with symposium handouts. Attendees will have the opportunity to visit a resource room where vendors will provide information about Social Security disability, vision care, massages and more. Lunch with the Experts will allow attendees to be seated at a table with a physician, nurse practitioner or other experts on specific topics.

“Each year we bring cutting-edge information to people struggling with lupus,” said LFA, Indiana Chapter President and CEO, Phyllis Simko. “We gather experts in various fields to discuss topics of interest to all lupus patients.”

Approximately 1.5 million Americans have a form of lupus. Based on 2006 census information, it is estimated that 34,187 of Indiana’s residents have lupus; including 2,671 residents in Lake County, 865 residents in Porter County and 597 residents in LaPorte County.

More than 5 million people worldwide struggle with the health consequences of lupus. Inflammation is considered the primary feature of lupus. Lupus is a potentially fatal autoimmune disease capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys, and brain. In its most severe form, lupus can cause disfiguring rashes and scarring, multiple miscarriages, kidney, heart and lung failure, impaired neurological function, strokes, heart attacks and death.

Despite its enormous public health implications, lupus remains a dangerously under-recognized and under-appreciated health issue. More than half of all people with lupus suffer four or more years and visit three or more doctors before being diagnosed with lupus. Lupus can be difficult to diagnose because its symptoms are similar to those of many other diseases. There is an urgent need to educate patients and health care providers to achieve earlier and more accurate diagnoses. Improved management of lupus will reduce and prevent its adverse effects, particularly among those communities most severely affected.

Nine out of ten people with lupus are women. Eighty percent of new lupus cases are diagnosed among women ages 15 to 44.

The Lupus Foundation of America is the nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus. Research, education, and patient services are at the heart of LFA's programs. The Lupus Foundation of America, Indiana Chapter provides awareness and education for the signs and symptoms of lupus for early diagnosis and treatment. Volunteers from the chapter facilitate support group meetings in Lake and Porter Counties as well as Fort Wayne, Indianapolis, Richmond and Evansville. Support group meetings are free and provide lupus education as well as peer support.

The chapter office, which serves the entire state, is located at 2642 Eleanor Street in Portage. For more information about the LFA, call 800-948-8806 toll free or log on to www.lupusindiana.org.

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