Betty's Story
World Lupus Day – What does it mean to you and me?
The World Health Organization proclaimed the first ever World Lupus Day on May 10, 2004, giving global recognition to lupus and the need for increased awareness about this puzzling disease. Now May 10th each year is designated as World Lupus Day!
When I first heard the news of this declaration, I was personally surprised at my own reaction. Granted it was a monumental step on behalf of lupus awareness, improved health care and research, but to bring a tear to one’s eye and a lump to your throat? What is that all about?
My feelings the second year, in 2005, were not as intense, but still the same; so I am compelled to tell you why.
My personal journey with lupus has now spanned well over four decades, during which time the word “lupus” almost always required definition. The consequences I now realize, were avoidance of any discussion, communicating only with the medical world where the search for answers was similar to my own. Personally it meant denial, a seemingly easy route at the time.
Lupus Canada’s national awareness programs in recent years have hastened to change these feelings. When I became involved as a volunteer with Lupus Canada a number of years ago, lupus awareness became a passion for me!
In 2004 I was immediately motivated to utilize the World Lupus Day observance to generate greater awareness in my own community, and my own province. Contacts were made first with my own Member of the Legislative Assembly and Members of Parliament in my community, as well as our Premier; the responses were all positive. If they had not heard of lupus before, these legislators were interested in receiving information, not only about lupus and my personal connection, but also about our local and provincial organization, information which I eagerly shared.
Saskatchewan MLA Ken Cheveldayoff, delivered a Member Statement in the Saskatchewan. Legislature on May 10, 2004, and again in 2005. The Hon. John Nilson, Saskatchewan Minister of Health, issued a proclamation recognizing May 10 as World Lupus Day in Saskatchewan in 2004 and again in 2005.
On May 10, 2005 MP Lynne Yelich delivered a Member Statement in the House of Commons. Both Mr. Cheveldayoff and Mrs. Yelich detailed the medical nature of lupus and acknowledged the work done by volunteers of the Lupus Erythematosus Society of Saskatchewan and Lupus Canada.
Our local newspaper this year carried a timely story about World Lupus Day, acknowledging our work locally, but also recognizing the importance of global awareness.
So that is what fuels our passion for lupus awareness in this province, and ultimately benefits every individual who is touched by this disease. With each World Lupus Day bringing the hope of improved health care and more prominence to research, the excitement heightens. I would hope that it does the same for all lupus volunteers.
Betty Bellamy
LESS Essay Chair / Publicity Contact
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