Today marks the beginning of our contribution in raising lupus awareness – especially to those living here in Oregon and SW Washington.
Throughout the month of May, National Lupus Awareness Month, we will be hosting guests who wanted to share their perspectives, expertise, roles, struggles and triumphs, humor and humility on what lupus means to them. Although there will be a great deal of emotion and information presented, there are some elements to all of the contributions that every reader will be able to identify with – whether you have lupus or not. Many of the guests have more than just lupus, as is often the case, and will offer some additional insight into those health challenges. Look for those common threads between the words and consider for a moment this one statement:
“Someone you know has lupus“
It would be fitting to have this introduction include information about what lupus is or isn’t. If you are new to lupus or if you don’t have lupus, but know someone who does, then your first stop on the web should always be a reputable and research-based source with the “.org”, “.gov” or “.edu” at the end of the website’s address. Here are a few that we recommend as reliable lupus information sources:
Lupus Foundation of America – National
Offers up-to-date research and advocacy information and is usually referred to new patients by their physicians. It also has an excellent web tool that will give you a visual guide to how lupus can affect the body. We recommend that you consider using this tool as a way of communicating with others about how lupus affects you. They may be able to better understand the challenges you face.
Lupus Foundation of America – Pacific Northwest Chapter
Representing the Pacific Northwest, this chapter has been working for Oregon in providing educational seminars, advocacy and membership opportunities, resource and referral information, and sponsor several walks and support groups throughout the PNW. You will have the chance to ‘meet’ both the Executive Director and President of the Board, who will be our guests here this month.
This organization is located in NY, but offers excellent information and is a valuable model for us here at MLWT in serving Oregon and Washington. Their Lupus Cooperative of NY is a collaborative effort between professional and community-based organizations seeking to serve inner-city individuals. The Foundation is also forming a new lupus “partnering” project similar to what we do here at MLWT.
Although they do not hold any walks in Oregon at this time, they do hold a walk in Seattle every year with tremendous benefit for us all. They utilize a peer review process, modeled after the National Institutes of Health (or NIH), as a means of further ensuring the quality of the proposals they receive for consideration.
An outstanding resource for new research information and offers a direct source for learning about local clinical trials called Lupus Together .
Here you can find new collaborative efforts in addressing the lupus treatment and service disparities for women of color, who are three times more likely to have lupus. Last month, they unveiled “Could I Have Lupus?” , a new National Ad Council Campaign designed to bring more public awareness of this disease with the hopes for increased research and community support.
As we are bombarded with the latest news and updates on the ‘formerly known as the virus called “The Swine Flu” ‘ now referred to as H1N1 influenza A, recognizing and supporting research efforts on how our immune systems work is of the essence. We will hear plenty of speculation and hysteria, tempered with a good dose of politics, over the next few months~ a perfect opportunity to open up the discussions with others who are NOT living with lupus. The symptoms mentioned for this virus are quite similar to those found in lupus. In fact, there is research now that suggests that this virus may act on the body prompting similar immune system responses to lupus by causing damaging inflammation.
Since we aren’t going to know anything for certain for quite awhile, the best bet is to stick with what we do know:
-An estimated 1.5 million men, women and children are diagnosed with lupus in this country alone
-Some die from it, while others are able to live full lives as long as their disease is managed.
-It has been over fifty years since a drug for lupus has been introduced, yet more people are being diagnosed with it (including our own military veterans) every day.
-The initial symptoms are generally flu-like and can create severe internal damage through inflammation without warning, if not treated early.
Unfortunately, it takes something contagious for people to recognize what we with lupus live with every day~ but, if that is what it takes, then let’s start talking, folks.
