Lupus & Patient Advocacy
Shanelle was diagnosed with lupus in 2004, the summer of her sophomore year. After months of hiding it, she shared her poem “Vanity” at the Nuyorican Poets Cafe and quickly realized the story of her diagnosis needed to be told. She began her mission to speak up for those living with lupus so they know they are not alone and as a testimony that you can truly LIVE while battling a chronic illness.
Since then, Shanelle has performed at numerous Walks for Lupus, spoken alongside the President of the National Institute of Health, lobbied for patient rights on Capitol Hill, featured in USA Today on the importance of clinical trials, was highlighted in Women’s Health Magazine, and hosted a column on Lupusnewstoday.com. She is a member of the CISCRP Patient Advisory Board, has served on foundation Marketing/Communications Advisory Councils, and has lectured at hospitals and pharmaceutical companies on the importance of patient choice and voice. She featured in a mini documentary for the Lifetime Network and the FDA on the importance of diversity in clinical trials. She is the co-host of Better Together, a webinar series on BlackDoctor.org that explores stories from various leaders in lupus alongside medical professionals and shares patient resources.
Shanelle continues to be a leading voice in Lupus and patient advocacy, sharing her story, experience with clinical trials, and helping all truly understand the complexities and opportunities within the patient experience.
“Vanity (A Poem for Lupus)”
What is Lupus?
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates auto-antibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Lupus is also 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.
Because lupus can affect so many different organs, a wide range of symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.
Lupus is also 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.
Because lupus can affect so many different organs, a wide range of symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.
The idea that lupus is generally a fatal disease is a big misconception. In fact, the prognosis of lupus is much better today than ever before. It is true that medical science has not yet developed a method for curing lupus. And some people do die from the disease. However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan if they:
follow the instructions of their physician,
take their medication(s) as prescribed, and
know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.
Excerpt from The Lupus Foundation of America
Shanelle’s Story on Access Health via Lifetime Network