February 09, 2011

Guest Blog: The Importance of Advocacy Day

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


Anonymous said...

I kept my head in the sand. I wanted to stay ignorant of this illness I was diagnosed with. I had suspected it long before I was diagnosed. Now, I try to be more aware and informed of what is going on with my body. I had suffered through some misdiagnoses; now, I don't let the doctors tell me what to do or how to feel about it. I tell them.

Anonymous said...

I am trying to reach Mary Jane Goodman - Please let me know how I can blog on this site. I have important information to share but do not know how to do it. I have been dealing with Lupus for 32 years. Many health issues have occured but I have taken control of my life and my disease. It can be done, would love to share with you and many - just don't think it can be done with blogging, need some help. Thanks for contacting me to hear my story Mary Jane. Blessings, Joanne 610-547-2456

Sophie - LFA said...

Hi Joanne, Mary Jane was a guest blogger for this post. I am in charge of the actual blog so please email me at yan@lupus.org if you have any questions.