Today's blog comes from Mary Jane Goodman-Giddens, a past participant in the Lupus Foundation of America's Advocacy Day. She is a mother of six, two of whom are living with lupus. To join her and others at LFA's Advocacy Day 2011, register today at www.lupus.org/advocacyday.
Advocacy Day 2011 is one of which I plan to be a part. The fight against the disease of lupus is an action many, as those in my family, take ever so seriously. As with many, it was a fight we were drawn into without warning. Those living with lupus, acting as caregivers or are loved ones of those with lupus feel a natural inclination to work to find a cure for the illness with which we have become all to familiar.
As a participant in Advocacy Day 2010, I was privileged to meet with members of our government and voice my concerns for those suffering. Meeting with these men and women was a chance to speak to the need for more funding for lupus research. That day in March afforded me the time to speak for increased funding for awareness and education for the public and physicians. As an advocate, each of us puts a face to this disease, a crucial part of the day's work. Those with whom we communicate can glimpse the frustration and the suffering that is experienced by taking medicines that are toxic once the disease is correctly diagnosed. They can hear of the pain brought by the disease itself. To be able to reach our U.S. Senators and Representatives in this capacity aids the fight for a cure. These meetings work towards a better quality of life for lupus sufferers.
Perhaps for me, meeting other attendees was of equal importance. Emotionally, it was quite striking to sit with so many affected by lupus sitting in one large hall on the day set aside for training and preparation. It was at once impressive to witness such strength so many carried as patients of lupus and at the same moment distressing to realize that one disease had hurt and challenged so many in so many varied ways, affecting nearly every organ system of the body.
One woman stood out to me in particular. She had left the hospital to attend Advocacy Day in Washington, D.C. In pain, she traveled and told her story. Her strength and courage, and those of others just as she, serve as an inspiration to me.
I plan to be at Advocacy Day 2011.
Mary Jane Goodman-Giddens
Mother of six; two living with lupus