This morning, Lupus Research Institute (LRI) joined the U.S. Congressional Lupus Caucus and other lupus community partners to tackle “Mitigating the Public Health Consequences of Lupus, the Prototypical Autoimmune Disease. We brought 31-year old Kaamilah Gilyard to DC to help members of Congress appreciate the very real and pressing needs of people living with the often overlooked disease lupus. She gave voice to the challenges many face getting diagnosed with lupus and living with the disease.
The audience was genuinely moved by Kaamilah’s description of the near-death complications she has suffered, typical of the heart and lung damage and memory loss many people with lupus endure. Kaamilah also emphasized the difficulty she and all too many go through to be correctly diagnosed with lupus. It took two years and a trip to the emergency room for her to learn that the symptoms she had since she was 15 – fatigue, joint pain, and anemia – were not arthritis, mononucleosis or syphilis as doctors had thought, but in fact signs of her immune system attacking her own body that characterizes lupus.
While everything Kaamilah described painted a dramatic picture of what is common among lupus patients, what people seemed to relate to the most was her anxiety about accepting her best friend’s invitation to be a bridesmaid. “I had to prepare my friend for the possibility that I could be unable to walk down the aisle if I happen to have a flare that day.”
Speakers at the briefing included Congressional Lupus Caucus Co-Chairs U.S. Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA) (pictured below) as well as Susan M. Manzi, MD, MPH, West Penn Allegheny Health System and Temple University School of Medicine and Stephen Katz, MD, Director of National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
Margaret Dowd, LRI President and CEO commented, “We thank Representatives Rooney, Keating, Ros-Lehtinen and Moran for providing this forum and giving the floor to people living with lupus who so powerfully illustrated as no one else could their daily struggles. Working together on a bipartisan basis, these Representatives have gathered their colleagues today to hear first-hand why Congress must continue to support efforts to meet critical needs of people with lupus and other autoimmune diseases.”
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