LIVING WITH LUPUS | Betty Bellamy

World Lupus Day – What does it mean to you and me?

Story by Betty Bellamy
LESS Essay Chair / Publicity Contact

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.