Cindy Messerle, CEO of the Lupus Foundation of America, Philadelphia Tri-State Chapter, gave us an update on their mission and upcoming services and events. She described their goal, a life-free of Lupus, and their work in education, patient support, and advocacy for research money. We discussed the auto-immune disease that can affect anyone, at any time, although 90% diagnosed are women, between the ages of 15 and 40, and people of color are more than twice as likely to develop it. She noted that because of the variety of symptoms and the disease’s characteristic flare-ups and remissions, most take five years or more to be diagnosed. The disease can attack any organ, left untreated it can cause kidney, heart and other life-threatening damage. damage It can isolate a person, they are more vulnerable to infectious disease and the flare up can cause chronic fatigue. It’s also an expensive disease, many patients are unable to work full time and costs of treatment can top $25,000 a year. She spoke on the recent treatment breakthroughs, two new drugs and a new indication for an existing one have been approved over the past two years, the first in decades. She described some of their services, including peer support groups, monthly workshops on living with the disease and a large digital reference library. Finally, an invitation to join them for their two big fund-raisers, the Lupus Loop and Walk to End Lupus Now at Memorial Hall in Philadelphia on October 30th, and the Walk to End Lupus Now at Tubman-Garrett Park in Wilmington November 13th.
For more information about them, to volunteer or to get details on the Walks go to lupustristate.org and follow them @Lupustristate.