LRI Co-Hosts Congressional Briefing to Highlight Unmet Needs of People with Lupus

 

Lupus Research Institute Co-hosts Lupus Congressional Briefing to Highlight Serious Unmet Needs in Lupus

Sponsors 31-Year Old Kaamilah Gilyard to Provide Patient Perspective

 

NEW YORK, NY – July 11, 2012. The  Lupus Research Institute (LRI) joined with members of the U.S. Congressional Lupus Caucus and other lupus community partners in sponsoring a Congressional briefing today entitled, “Mitigating the Public Health Consequences of Lupus, the Prototypical Autoimmune Disease.”  Speakers 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) 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).

“As a co-founder of the Congressional Lupus Caucus, I want to thank the lupus experts, researchers and patients who spoke to us today about the impact of lupus on public health,” commented Congressman Rooney.  “Lupus is a devastating disease for which there is no cure, and I hope that by working together here in Congress to help advance lupus research and increase lupus awareness, we can help improve the quality of life for people with lupus and their families.”  

The briefing was a joint effort by the LRI, Lupus Foundation of America and the Alliance for Lupus Research to educate Members of Congress and their staffs about lupus and its effects. The Congressional Lupus Caucus was formed in the House of Representatives in February, 2012. 

What it’s Like to Live with Lupus: the Patient Experience
Determined to help Congress appreciate the very real and pressing needs of people living with the often overlooked disease lupus, Kaamilah Gilyard took off from work to travel to Washington for the briefing. Her description of the near-death complications she has suffered was dramatic but in no way exaggerated, typical of the heart and lung damage and memory loss many lupus patients must endure.  Kaamilah also emphasized the difficulty 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 about wanting to stay home from school, but in fact signs of her immune system attacking her own body that characterizes lupus.

“Aside from the physical toll, what I find most difficult is the inability to make any long-term plans because I never know when lupus will flare up,” explained Kaamilah.  “I recently accepted my best friend’s invitation to be her bridesmaid, but with the understanding that I could be unable to walk down the aisle and have to bow out of the wedding if I have a flare that day.”  Graduate school is a primary long-term goal that she has to be concerned about committing to. “It took six years for me to complete college because just getting to classes was tough, and I can only work part-time because that is all the stress and exertion I can manage.” Kaamilah is also limited by the memory loss she and many others call “lupus fog.” “I have to write everything down!” Yet Kaamilah’s attitude is inspiring, finding ways to keep adapting to the unpredictable and debilitating obstacles lupus puts in her path.

Currently there are few therapeutic options for this often misdiagnosed and unpredictable autoimmune disease. Lupus affects 1.5 million Americans, 90 percent of whom are women, primarily in their childbearing years. Women of color are at greatest risk but older women, men and children can also be affected.

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 their daily struggles as no one else can.”  She continued, “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. That means continuing to support professional education to diagnose and treat the disease promptly. And that means providing the funding for the National Institutes of Health to allow investigators to further pursue the kind of innovative, novel research funded by the LRI that can discover better treatments and a cure for lupus.”

Learn more about the Congressional Caucus