This is what you "need" to know about lupus. Okay, it is what I think you "need" to know about lupus. The writing prompt for today asked me to introduce lupus to you (and other Health Activists taking part in the 2013 WEGO Health “Health Activist Writer’s Month Challenge”) there are more than a few things I want to share about “lupus”. Do I write honestly? If I did it would start something like “Hello Health Activists, I am writing on behalf of Lupus and Lupus devastates and ruins lives.” or “Lupus Style is about finding your flair and avoiding a flare.” As a Health Activist (and since you are reading this post I consider you, gentle reader are a Health Activist) you know that there are essentials and that “wants” often are put aside and “needs” take priority. What you “need” to know about lupus is more than I can put into a single blog post especially since as a Systemic Lupus Erythematosus patient I have experienced “lupus fog” and would probably forget to include some information. So for Day 2 of HAWMC, here are few things (I believe) you need to know about lupus.
As a Health Activist you need to know what “it’ (lupus) is, according to the National Institutes of Health the definition reads “Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems.” (Source: http://www.niams.nih.gov/health_info/lupus/ )
The lupus community has many needs one a critical need is the need to raise awareness. Let me tell you what the NIH definition doesn’t. Getting diagnosed with lupus is a challenge. The symptoms of lupus mimic other diseases and many physicians don’t know much about the autoimmune disease. Today, patients are often asking a doctor “Could I have lupus?” http://www.couldihavelupus.gov/ I am glad that patients are searching the internet, becoming aware and finding resources. I believe that an informed patient is a partner in her (or his) wellness/treatment/therapy with the physicians and health care providers. My hope is that doctors are willing to listen and learn from patients.
To that end, The Lupus Initiative http://thelupusinitiative.org/ is a resource that Health Activists need to know about. Lupus education is vital, developing medical education programs for health care practitioners to “address the persistent gaps between the lupus-related health status of minorities and non-minorities, women and men, and those above and below the poverty line” It is imperative that the medical community educate themselves and stay current on the latest treatment and research developments in lupus.
The need for awareness goes beyond educating patients and medical practitioners, we need to inform our elected officials about Lupus too. That's where the Congressional Lupus Caucus comes in. http://rooney.house.gov/index.php?option=com_content&view=article&id=3346 The Congressional Lupus Caucus "was established to provide a forum for members of Congress and their staff to actively engage in a dialogue to improve the quality of life for people with lupus and their caregivers through supporting the advancement of lupus research and increasing awareness of lupus among the public and health professionals." I have travelled to Washington, D.C. to advocate for increased support of lupus research and educating medical professionals. If you want to be a Health Activist for lupus, you can. All it takes is a little time. Ask your Representative to join the Congressional Lupus Caucus. You call call their office on Capitol Hill, email them or call the local field office and simply explain why you feel the Congressional Lupus Caucus is important.
There is so much more to share about what Health Activists "need" to know about lupus. But at this time, this lupus patient, advocate and activst needs some rest. Thank you for reading and if you have any questions feel free to ask me.