by Jennifer Monroe, LFM President
This issue of Lupus News and the May activities listed within it are dedicated to recognizing Lupus Awareness Month.
What does dedicating a month to awareness of lupus actually accomplish? It seems that there are so many months dedicated to so many health issues and diseases. There are those that garner a large amount of national attention and recognition, those which have high profile celebrity spokespeople, extensive media campaigns, and those that are very well known in the public consciousness.
And then there is lupus.
For many, lupus is still cloaked in mystery. It often has been more about a whisper than a roar.
Lupus is called the great imitator because it can comprise a variety of seemingly unrelated symptoms, non-specific symptoms, or symptoms that are highly specific but which may or may not occur simultaneously – symptoms that can mimic a variety of other health-related conditions and which can easily be confused with other diseases. As a result, lupus can often take years to diagnose correctly. The recorded history of lupus dates to the Middle Ages, and yet we still do not know its origins or have a cure and it’s still not well understood by the general public. Lack of knowledge about every aspect of lupus is common.
Research has shown that 59 percent of Americans have limited knowledge of lupus and its destructive impact, and yet one in every 200 individuals is estimated to be living with the disease. This significant disconnect certainly supports the urgency for greater efforts at increasing public awareness.
Why should we dedicate a month to raising public awareness about lupus?
Because increases in public awareness lead to increases in diagnoses. Because increases in awareness lead to increases in funding dedicated to discovering the origins of lupus, as well as to better treatments and, perhaps, someday a cure. Because studies show that individuals with lupus who are informed and who participate actively with their healthcare teams may experience less disease damage and have better overall health outcomes. Because supportive services are available for those with lupus here at the Lupus Foundation of Minnesota, and studies have shown that higher social supports are associated significantly with better physical function and better mental health. Because understanding what causes the disease and why some people are more likely to develop it may one day lead to quicker diagnoses, less toxic treatments, and possibly steps toward prevention and a cure.
Raising awareness requires a louder voice, and Lupus Awareness Month provides us the platform to unite our voices and join together – to be louder, to be heard, to be known. So, this month, if you haven’t before, participate in an event, show up for a workshop, call, volunteer, post a note, share what you think, how you feel, and what you want. Because when we all join forces, really good things can happen!
This month our fight to raise awareness about lupus requires us to roar, not whisper.