For 2 years, Molly McCabe struggled with illness after illness, including pleurisy, respiratory infections, and shingles. Only after visiting 14 doctors did Molly receive the life changing diagnosis of lupus. Despite the many struggles Molly had to endure before receiving her diagnosis, she considers herself lucky, because she knows that “many people suffer for years before getting a diagnosis.”
Lupus is a debilitating disease which has shown no mercy to Molly. Due to constant pleuritic pain, an inflammation within the lining of the lungs, Molly was forced to end her career as an opera singer. Molly says “Having lupus changes everything in your life. You have to grieve for the life you thought you were going to have and learn to accept the challenges that lupus has put in your life. I wake up every day hoping that today is a good day, while knowing in the back of my head that I could end up in an ambulance by the end of the day. It’s the unknown and the constant possibility of illness that I find the most challenging.”
When Molly was first diagnosed, she and her mom would search the internet looking for that “magic pill” to make her feel better, only to be disappointed by the lack of information available. This didn’t stop Molly; she decided to do something about it, and in 2007, with help from her mom, they started Molly’s Fund Fighting Lupus with the vision to always serve the patient first. For 10 years, through Molly’s Fund Fighting Lupus, Molly and her mom provided information, resources, and comfort to those affected by lupus. While Molly is fortunate enough to have now been in remission for over 2 years, she knows, “that it could come back at any time and I [have] had to learn to live with that possibility. I live my life to the fullest while I can, because you never know when those bad days will come again.”
Currently, Molly serves on the Lupus Research Alliance (LRA) board and regularly travels to Washington, D.C. to advocate for the Lupus Research Program (LRP). During her time with LRA, Molly took advantage of the opportunity to serve as an LRP consumer peer reviewer. Molly admits that, during her first day of peer review, she was intimidated by the scientific knowledge of the doctors and researchers in the room, but says that participating was “one of the best decisions I ever made.” Molly believes consumer involvement brings a unique perspective that is essential to the review process and that the primary role of a lupus consumer reviewer is to remind scientists how the proposed research will affect the lives of those living with lupus.
Molly is honored to have been part of the LRP peer review process for the past 2 years. From her experience, she has gained a greater understanding of the innovative approaches researchers use to improve treatment options for lupus patients and, as Molly puts it, “if only 1% of the ideas come to fruition, lupus patients are going to have a much stronger future that is full of options.”
Last updated Friday, September 11, 2020