By Chris Bavender
Walkers are set to take part in the eighth annual Walk to End Lupus Sept. 27 at Ft. Harrison State Park. And for two Hamilton County residents, it holds special significance.
Judy Schaff, Carmel, and Javier Rodriguez, Zionsville, are living with lupus. Lupus is a chronic disease affecting primarily women in which the autoimmune system turns on itself and attacks healthy organs in the body. The disease is very difficult to diagnose as there is no single test that diagnoses lupus.
Schaff, 60, was diagnosed with lupus by a dermatologist when she was 24.
“The symptoms that I had were itchy rashes on my scalp, face, eye lids and neck. Unlike many patients, my doctor had strong suspicions immediately, about my lupus diagnosis,” she said. “After my first appointment, a great deal of lab work was ordered. Upon the second appointment and receipt of the lab work, the doctor indicated that I needed to be hospitalized for further evaluation.”
That hospitalization lasted 10 days.
“During my hospitalization, arthritis in my knees started, as well as many most of the other joints in my body,” Schaff said. “The pain was severe and constant for the next two years.”
Thirty-six years later, Schaff said she is feeling the best she has since her initial diagnosis.
“I take approximately 20 pills per day, to deal with pain and the side effects of the persistent dosing of prednisone,” she said. “My prognosis at this time is fairly good. I currently see a rheumatologist and several other specialists to deal with problems caused from taking prednisone.”
For 72-year-old Rodriguez, his battle with lupus started at the age of 59, when he was living in Las Vegas.
“I kept going to the doctor and they would send me to a specialist who wouldn’t find anything wrong and send me back to the doctor. I would have a pain in my knee one week and the next week it was gone and then it was my elbow,” he said. “I was getting worse and so eventually I was home in bed and already losing sort of control of my brain.”
Fortunately, his daughter came to visit on her way to California and took one look at Rodriguez and rushed him to the hospital.
“I was already septic by then and then even at the hospital they couldn’t figure out what was wrong. I had six or seven doctors come in and eventually one – Dr. Christine Young – a rheumatologist – took one look at me and my file and said I had lupus,” he said. “I still have her card in my wallet because I will always be grateful to her because she basically saved my life.”
Today, Rodriguez, who moved to Zionsville seven years ago, said he has gone from being bed ridden to doing the Mini-Marathon several years. He’s still on medicine and will be for the rest of his life, but hasn’t had a reoccurrence.
According to Jan Ferris, Chief Executive Officer, Lupus Foundation of America, Indiana Chapter, the annual Lupus Walk is the largest fundraising and awareness event of the year. In 2013 more than $130,000 was raised by 1,620 walkers.
“It is our primary source of income that allows us to provide lupus patient programs and help fund research to find a cure,” Ferris said. “There are some 36,000 lupus patients in Indiana. And one in four becomes disabled, unable to work or lead a normal active life. The average cost to treat a lupus patient every year, is $19,000. There is a great need for more awareness of lupus and more research.”
Schaff agreed.
“When I was diagnosed there was very little known about lupus. At that time the prognosis for lupus was dismal. Approximately 95 percent of the patients died from lupus. I immediately started attending LFA Lupus Support Groups in Milwaukee, after my diagnosis,” she said. “I attended meetings faithfully for many years. I can say that the LFA saved my life, along with my physician. The money generated by the Lupus walk, helps provide education programs for newly diagnosed patients and their families, which is desperately needed.”
For more information, visit www.lupusindiana.org. To register for the walk – which is free – email [email protected] or call 1.800.948.8806.
