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Rare Disease Day… don’t judge a book…

By Miranda Wagner, Columnist

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In honor of Rare Disease Day, that took place on February 28, many of those suffering from a rare or “invisible” disease took to social media to express their desire to expand knowledge on such diseases as well as offer simple pleas, including myself. People posted in support of education on such diseases, more studies to be done and to simply ask people to not make haste judgements on them.

I suffer from a disease called Postural Orthostatic Tacycardia Syndrome or whats commonly known, at least among the sufferers and caregivers, as POTS. It is estimated by Dysautonomia International, that 70 million live with POTS and another 125 million suffer from a rare or invisible illness.  An invisible illness is 0ne in which the person that lives with a chronic illness but they do not “look” ill. I can be the first to say that my outer appearance well masks the storm inside my body.

Shockingly enough, POTS and other similar diseases are misdiagnosed and overlooked. Hospitals are quick to pass off the symptoms and slap misdiagnosis’s around without digging deeper. Rare Disease Day is dedicated to all of those that suffer from a chronic, rare, invisible disease that a lot of  people are quick to pass judgment on.  A simple plea from people such as us, is to do your research, offer a hand and the next time you see a handicap sticker with an apparent “non-handicap” don’t judge; we don’t walk around with signs saying how we are chronically ill and our outer appearances can be deceiving.  Alone we are rare, but together we are strong.

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