Posted: 18 Apr 2013 08:05 AM PDT
Imagine yourself as a young woman who by all accounts appears healthy. One day you experience flu like symptoms, see your physician, and are sent home with the usual: sleep, hydrate, take two of these, and you get better. But do you? Some time passes and you become sick again, this time with a different gamut of symptoms including recurring infections, joint pains, headaches, fatigue, depression, rashes, etc. As a result, you find yourself in and out of this complicated domestic health care delivery system, seeing one physician/specialist after another and are left with little to no answers.
Fast forward a few years. You're now in your mid-twenties and have found a personal physician who took the time to listen to your story of diverse symptoms. After reviewing our current symptoms, laboratory tests, and medical history, you finally have the answer to the question you've been asking yourself for years: Why am I always sick? You have systemic lupus.
What is lupus? It is Mysterious. Debilitating. Insufferable. Undiscriminating.
Lupus is a chronic, autoimmune disease that can often appear asymptomatic. It evolves over time and manifests with various, signs, symptoms, and clues, which eventually signal its presence. It's also known as the "imitator disease", because the symptoms often point to any number of other diseases. From on-set of initial indicators, to an eventual diagnosis, the process can take anywhere from 3-7 years. People of all races and ethnic groups can develop lupus. Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus too. Women of color are 2-3 times more likely to develop lupus.
Can you live a "normal" life with lupus? Sure, but the first step is receiving a diagnosis so you can effectively manage your disease. Lupus is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life. But a large subset of people with lupus are underprivileged, underserved, and often times have limited resources, such as health insurance or means to obtain health coverage. With extreme cases of lupus, work is difficult and without a support network comprised of family, a community, and/or employment, many people are left without medical attention.
When I started working with The Lupus Foundation of America, DC/MD/VA (LFA-DMV) my knowledge of lupus was limited. I have been in the Public Health sector for the larger part of my professional career and lupus was not really on my radar. I didn't realize what a mystery this disease in fact was until I started working with the organization. I am a firm believer that health care is a right not a privilege. Upon becoming part of this small chapter team, it became readily apparent what an impact this group of people makes in the lives of 80,000 individuals affected by lupus living in DC, Maryland, and Virginia. We are the only chapter that has a Patient Navigation program that includes support and resources to anyone affected by lupus in our service area at no cost to the individual. A number of the people who seek our help at LFA-DMV are underinsured or uninsured. Many are newly diagnosed, scared, and looking for answers and help.
Lupus is a multifaceted disease that can attack any organ system in the body including the skin, lungs, heart, brain, and kidneys. There is no known cause and no known cure. Research and awareness is needed, as only one drug has been approved specifically for lupus in the past 50 years. Lupus doesn't have to remain a mystery, nor an unknown. Through advocacy and awareness, we can bring this dark disease to light and work towards finding a cure. With all the benefits of the Affordable Care Act kicking in next year, more people will have access to care and resources, but lupus needs a bigger voice. I ask you to join me, and advocate for those that need a voice NOW and help us solve this mystery. The largest lupus awareness event in the area is taking place on Saturday, April 27th. You have the opportunity to walk with us down Pennsylvania Avenue and take steps towards a cure. This powerful event unites members of the lupus community and gives hope to those fighting this disease. Get involved today!
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Katherine Green is a Health Care Advocacy and Communication Consultant with Strategic Partnerships, LLC. Among other health agencies and nonprofits she currently is working with the Lupus Foundation of America, DC/MD/VA. Some of her previous achievements include working with PATH, Malaria Vaccine Initiative on the clinical management team. The RTS,S malaria vaccine candidate which the team worked on reduces malaria by approximately one-third in African infants. In addition, she worked with the Centers for Disease Control on developing systematic questions about gender and sexuality used by The National Health Interview Survey (NHIS) and other national health initiatives.
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