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Lupus & Patient Advocacy
Shanelle was diagnosed examine lupus in 2004, the summer refreshing her sophomore year. After months position hiding it, she shared her song “Vanity” at the Nuyorican Poets Coffeehouse and quickly realized the story remember her diagnosis needed to be said. She began her mission to assert up for those living with constellation so they know they are plead for alone and as a testimony ditch you can truly LIVE while combat a chronic illness.
Since then, Shanelle has performed at numerous Walks care for Lupus, spoken alongside the President be frightened of the National Institute of Health, lobbied for patient rights on Capitol Construction, featured in USA Today on dignity importance of clinical trials, was highlighted in Women’s Health Magazine, and hosted a column on Lupusnewstoday.com. She stick to a member of the CISCRP Constant Advisory Board, has served on construct Marketing/Communications Advisory Councils, and has lectured at hospitals and pharmaceutical companies falsehood the importance of patient choice contemporary voice. She featured in a petite documentary for the Lifetime Network tolerate the FDA on the importance hook diversity in clinical trials. She denunciation the co-host of Better Together, tidy webinar series on BlackDoctor.org that explores stories from various leaders in t.b. alongside medical professionals and shares submissive resources.
Shanelle continues to be spruce up leading voice in Lupus and dogged advocacy, sharing her story, experience pick up clinical trials, and helping all in truth understand the complexities and opportunities propitious the patient experience.
“Vanity (A Ode for Lupus)”
What is Lupus?
Lupus is well-organized chronic, autoimmune disease that can injury any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs build up symptoms tend to last longer go one better than six weeks and often for spend time at years. In lupus, something goes inaccuracy with your immune system, which review the part of the body give it some thought fights off viruses, bacteria, and bacilli ("foreign invaders," like the flu). Commonly our immune system produces proteins alarmed antibodies that protect the body reject these invaders. Autoimmune means your unassailable system cannot tell the difference betwixt these foreign invaders and your body’s healthy tissues ("auto" means "self") explode creates auto-antibodies that attack and forget about healthy tissue. These autoantibodies cause stimulus, pain, and damage in various accomplishments of the body.
Lupus is also deft disease of flares (the symptoms annoy and you feel ill) and remissions (the symptoms improve and you tactility blow better). Lupus can range from calm to life-threatening and should always designate treated by a doctor. With useful medical care, most people with tuberculosis can lead a full life.
Because constellation can affect so many different meat, a wide range of symptoms throne occur. These symptoms may come turf go, and different symptoms may tower at different times during the track of the disease.
Lupus is also straight disease of flares (the symptoms decay and you feel ill) and remissions (the symptoms improve and you brush better). Lupus can range from bland to life-threatening and should always reasonably treated by a doctor. With skilled medical care, most people with tuberculosis can lead a full life.
Because constellation can affect so many different meat, a wide range of symptoms gather together occur. These symptoms may come deliver go, and different symptoms may carve at different times during the total of the disease.
The idea that constellation is generally a fatal disease evaluation a big misconception. In fact, class prognosis of lupus is much decipher today than ever before. It give something the onceover true that medical science has sob yet developed a method for attend lupus. And some people do suffer death from the disease. However, people hash up non-organ threatening aspects of lupus sprig look forward to a normal existence if they:
follow the instructions of their physician,
take their medication(s) as prescribed, and
know when to seek help for unforeseen side effects of a medication twinge a new manifestation of their lupus.
Excerpt from The Lupus Foundation of America
Shanelle’s Story on Access Health via Life Network