I Have Lupus, Lupus Doesn't Have Me: Cindy Coney
Things do not always work out as we hope or intend, but it is important to be resilient in the face of new challenges life throws your way. Resiliency is one of the topics professional speaker, consultant, and patient advisor Cindy Coney lectures about and uses in her own life. Cindy has lived with lupus for over 30 years and, while treatments have extended her life, they have also caused life-altering issues to arise, such as infertility and life-threatening infections. "I often speak to audiences about the Plan A life I envisioned as a young woman, vs. the Plan B life given to me by lupus," Cindy says, and, although lupus has had a huge impact on her life and her family, she always tries to remain hopeful. "My work as a lupus advocate gives me hope that the future will be brighter for all of us who suffer from this devastating disease."
Ms. Coney began her advocacy work through volunteer work with a local chapter of the Lupus Foundation of America (LFA), educating, supporting, and connecting patients to critical resources. More recently, she served as the Chair of LFA's National Board of Directors. In this role, she worked with local chapters, the national staff, pharmaceutical companies, and a medical scientific advisory committee to ensure that patients are always the focus in the work being done. Cindy is a passionate voice speaking for lupus patients in all different sorts of situations - from testifying before an FDA Advisory Panel (to advocate for the first new drug for lupus in 50 years) to working as a consumer peer reviewer for the Peer Reviewed Medical Research Program (PRMRP).
Cindy first became aware of the PRMRP while working with the LFA in Washington, DC. Within LFA, she advocated for PRMRP to include funding of lupus research for many years, and LFA then nominated her to be a peer reviewer for PRMRP. Cindy enjoyed being part of the peer review process and appreciated that it was very patient-centered. "My expertise is very different from that of researchers, yet it was valued by all as an integral part of the review process. Each and every person sitting around the table weighed heavily the direct impact an application would have on patients, if funded." Reading and discussing the scientific proposals gave her hope that new treatments could emerge that would greatly improve care and quality of life for lupus patients.
Aside from advocating for funding of research, Cindy Coney has given a great many lectures and keynote speeches not only to lupus patients, but to scleroderma, spina bifida, cancer, and Crohn's disease patients as well. The common themes in all of these talks are resiliency in the face of debilitating disease and finding the courage to speak up and advocate for better patient care. "Never underestimate the power of your voice as a patient," she says. "It is easy to feel intimidated by the credentials of researchers, scientists, and doctors, but patients gain expertise by living with the disease every minute of every day." Above all, Cindy Coney wants patients to know that their voices matter.
When Cindy is not performing her advocacy duties, she enjoys the simple things in life - spending time with family and friends, walking her dog, reading, and writing. She does not let lupus and its significant symptoms keep her from enjoying amazing adventures, either - she has completed the Chicago marathon, gone hot air ballooning, and driven a race car at 124 miles per hour.