The Cruel Mystery

Extreme tiredness is one of the most frustrating symptoms of lupus.

Extreme tiredness is one of the most frustrating symptoms of lupus. Courtesy Flickr/teleyinex

"You have lupus."

Not the words I was expecting. I was hoping to hear that whatever my body had been going through was over, and I could resume my senior year of high school in peace like a normal 17-year-old. But that wasn't happening.

In September 2011, I was diagnosed with lupus, a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems--including your joints, skin, kidneys, blood cells, brain, heart and lungs. I'd been ill for months before my kidneys failed, resulting in weeks of hospitalization for chronic kidney failure. Thank God, my kidneys started functioning normally again and I've never had to go on dialysis. There have been trials though: muscle cramps, weakness, nausea, tiredness, hair loss, weight loss and weight gain, rashes and other symptoms. It's a lot.

Often called "the disease with a thousand faces," lupus is a aggravating illness. For me, the most frustrating aspect is the tiredness. It is random and, when it happens, all you can do is lie down. You must schedule your life around it or you will not succeed.

Thankfully, lupus is gradually receiving more recognition. Celebrities such as Toni Braxton and Nick Cannon have spoken up about their diagnoses and the necessary lifestyle changes required for maintaining optimal health. These include exercising, eating a balanced diet and taking medication to treat the different symptoms, .

On March 19, 2013, America's leading advocates for lupus research came together to host a congressional briefing to update the U.S. Senate and House of Representatives on the immediate need to fund scientific research for advancing new drug development, finding a cure, and voicing difficulties of those suffering with lupus, particularly those in financial despair. To help give voice to patients, the Lupus Research Institute, the Alliance for Lupus Research and the American Autoimmune Related Diseases Association, hosted the briefing with long-time lupus champion Senator Frank Lautenberg (D-NJ) and the Congressional Lupus Caucus.

"When you see a lupus patient who doesn't look sick, it's hard to imagine she suffers from a disease causing such fatigue and pain that he or she literally cannot make it to work or pick up her child from school," wrote Dr. Robert Katz of Rush University Medical Center and Northwestern Memorial Hospital in Chicago, Ill., in an article for "International Business Times." "But behind that healthy face is an immune system run amok, attacking her own body at random. Striking any organ and tissue, lupus is a leading cause of heart attack, stroke and kidney disease among young women."

Ninety percent of those who develop lupus are women. Men who develop lupus usually have more severity in some organs. Lupus develops most commonly in patients between ages 15 to 44, and can be passed down genetically. Because many lupus symptoms mimic other illnesses, it typically take three to five years to diagnose. Diagnosing lupus involves analyzing the results of several lab tests, a review of the person's entire medical history, and the history of close family members.

Rheumatologists (physicians who specialize in conditions affecting the joints and muscles) usually treat lupus, but some patients may need additional care from specialists, such as a dermatologist for skin problems, a nephrologist for kidney disease or a cardiologist for heart complications. The average annual cost to provide healthcare for a person with lupus is $12,643, and rises to nearly $21,000 with lost work productivity.

May is Lupus Awareness Month, and this May, the news of lupus finally reaching Washington is something to celebrate.


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