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Thursday, July 24, 2014
Fighting lupus one click at a time
Valley Stream woman takes to web to raise awareness
Courtesy Christine Miserandino
Christine Miserandino, of Valley Stream, has suffered from lupus for years and now advocates for awareness and funding research. She will throw an “Unbirthday Bash for Lupus” on Thursday and got Duane Reade to sponsor her gift bags.

From medical misdiagnoses as a teenager, to writing an inspirational essay as a college student, to becoming one of the faces for lupus awareness and funding, Valley Stream resident Christine Miserandino has been through it all.

As a 16-year-old, Miserandino was first diagnosed with lupus, a chronic inflammatory disease that occurs when the body’s immune system attacks its own tissues and organs. The pronouncement came after years of being told she had other medical issues like arthritis, or growing pains, or was simply yearning for attention.

Once she was properly diagnosed, her condition wasn’t always visible to the naked eye and people would often ask why she looked tired or felt sluggish. However there are times when lupus is noticeable, like four months ago when Miserandino suffered a stroke and was hospitalized for two weeks.

Over the years, she said, there haven’t been many medical breakthroughs in the world of lupus, although a new drug that she takes, Benlysta, was approved by the U.S. Food and Drug Administration about two years ago. According to Miserandino, it was the first new lupus medication to be made available in 50 years. “As much as there have been strides,” she said, “there haven’t been enough strides as far as I’m concerned.”

Miserandino said she gets about 30 to 50 emails every week from people across the country who are being routinely misdiagnosed when they have lupus.

As a student at Hofstra University, she wrote an essay called “The Spoon Theory,” in which she detailed what it is like to have lupus in an original way to a curious friend at a diner. Miserandino hands her friend a bouquet of spoons and asks her to run through her daily events. Each time her friend said something that required being active, she would take a spoon away to symbolize how a person with lupus must be conscious that they cannot do everything they’d like.

Shortly after the essay was posted on her website, www.ButYouDontLookSick.com, Miserandino noticed Internet traffic from around the world. Her website aims to help everyone with a chronic illness or invisible disability, and the website’s Facebook page now has nearly 60,000 “Likes” from people across the globe.

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