The ‘Cruel Mystery’ and Butterflies of Hope

Butterfly of Hope
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Imagine your life as an independent adult.  Now think of the decisions you’ve made in this life – where have they taken you, what have you become?  For one woman, this independence, and her decisions led to a career as a paramedic.  She was charged with working the streets of St. Louis, night after night – day after day.  She traveled the city and responded to various calls – a drunk had fallen, a man was stabbed, a child was shot.  Sometimes she prevented death – and other times, it was just too late.  Every time, her objective was the same – to rescue them, to aid their healing, or to ease their suffering – to save them.

Now imagine you’ve been diagnosed with a cruel and mysterious disease, as was the case of this paramedic – she can no longer roam the streets of St. Louis – to heal, to rescue, or to save.  This ability was taken away from her, so she repurposed her independence– to teach and to inspire.

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Charlene Jansen (a 2007 graduate of Lindenwood University), is this woman, and in 1995, her life changed forever.  Jansen said, “I had just went back to work for the St. Louis Fire Department as their training officer and realized that I was having extreme bouts of fatigue, some irritability, and some muscle and joint aches and pains that were not typical of what one would experience with that profession.”

Jansen was diagnosed with lupus – an autoimmune disease known for its difficult detection (an average of three to five years), inconsistent symptoms, and ability to ravage the body and its various systems and functions.  According to Megan McLean from the Lupus Foundation of America, lupus is, “an invisible chronic illness.  Some of the most common symptoms include fatigue and joint stiffness [and] these symptoms can be incredibly debilitating [and] hard to explain to your family, friends, or coworkers.”

Visit the Lupus Foundation of America

McLean said, “We don’t know what causes lupus or how to cure it [but] many symptoms of lupus mimic those of other illnesses, which makes diagnosis more difficult.  Moreover, lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints, and skin.”

Lupus Infograph

For Jansen, the lupus diagnosis came alongside a diagnosis of rheumatoid arthritis, “Initially they put me on very stabilizing medications and that didn’t work.  I ended up going on some chemotherapy.  At that point, they said that if I don’t go into remission, that I could have some very serious, debilitating health consequences within ten years.”

Jansen said, “In 1995, I worked for the St. Louis Fire Department as a training officer, could easily get on an ambulance and take care of individuals, walk stairs, stand for long periods of time.  I can no longer work on an ambulance.  I can no longer walk up steps without extreme difficulty.  I can no longer stand for extended periods of time.  Those things that [I] did before are things I cannot do now.”

Hope Butterfly
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According to McLean, “Lupus research remains underfunded relative to its scope of devastation.  A sustained, coordinated and well-funded federal research effort on lupus would lead to a better understanding of what causes the disease and could help lead to the discovery of safe, more tolerable and effective treatment or lupus.”

What is the Lupus Foundation doing about Lupus?

McLean mentioned that in March of 2011, the drug BENLYSTA was approved by the FDA as the first new treatment of lupus in 50 years, but according to Jansen, the treatment wasn’t as effective as its engineers hoped.  So where does this leave people like Jansen?

Jansen said, “What I want to happen is for there to be a greater awareness for lupus – more research into that – and I just think that’s going to take a voice to compete against some of the other diseases out there.”

The Lupus Foundation of America is currently petitioning Congress to increase funding to the National Institute of Health (NIH) to expand medical research for lupus.  Unless funding increases, McLean cautions, “people with the disease will continue to suffer its [lupus’] devastating effects.”

Add Your Name to the Petition

Blade Butterfly
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These effects, for Jansen, lead to frustration when others doubt her abilities, and inspire only one fear, “I fear my loss of independence.  I don’t fear death, I fear being a burden on my family.  One of the things that’s so hard with lupus [and rheumatoid arthritis] is that there are very few outward signs that are going to indicate to an individual the severity of illness, and so often times when you say ‘I can’t do this’ or ‘I can’t do that,’ frequently you just see that doubt in someone else’s eyes.”

A resilient Jansen said, “What I did – since I couldn’t rely on being a paramedic anymore, which was the best job I’ve ever had in my life – I went to school – got my Master’s degree – and I teach paramedics.  I feel like I have to continue to do this, because if I sit at home, I think that’s truly the beginning of the end for me.  I think it would be really easy to cave into this disease process and not try at all.”

With her husband, David Jansen, by her side, she will continue to try – to live, to teach, and to inspire.  David Jansen said, “I know it’s going to be rough – but we’ll grow old together [and] make the best of what we have – we have each other.”

Charlene Jansen plans to begin coursework for her PhD, to continue instructing her students at Mineral Area College, and to enjoy life as it comes – day in and day out.  She’s independent, and she’s making decisions, but the life she’s saving now is her own.

 May is Lupus Awareness Month

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