On Rare Disease Day, I’m Celebrating Being Extraordinarily Ordinary

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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Rare – adjective

  1. Not occurring very often; uncommon
  2. Unusually good or remarkable

On Feb. 28, the world will celebrate international Rare Disease Day. A rare disease is one that affects fewer than 200,000 people in the U.S. Almost 7,000 rare or orphan diseases meet the criteria to be considered rare. Multiple sclerosis is not among them.

An estimated 1 million Americans have multiple sclerosis. This number far surpasses the criteria necessary to be classified as rare. Having MS does not align with the first definition listed above. I most certainly embody the second as a direct result of the disease. Life is difficult, painful, trying, tearful, frustrating, and humbling. It is also unusually good and remarkable.

Living with multiple sclerosis does not make me remarkable. How I choose to live with MS certainly does. My diagnosis left me feeling shattered and scared. I knew little about this disease. The small amount I did know included generic stereotypes. My existence became fear-based as I worried about losing my ability to walk. I was concerned for my husband and family. I perceived my life to be over.

I was wrong.

From that moment, a new life began. I could not change my diagnosis, but I was ready to create my prognosis. And at that moment, I discarded fear and chose faith. I was not going to run from my MS but rather toward a future of my choosing.

The most ordinary diagnosis brought extraordinary discoveries. My writing was spotted in a faith-based blog, and I was offered a job as a columnist. I remember that email with fond excitement. Three and a half years later, and I am full-time with the same company. On this Rare Disease Day, I will celebrate the result of my diagnosis. I will honor the journey thus far and toast to the road ahead.

My most unique experiences have been a direct result of my non-rare disease. So, too, have some of my darkest moments. The rarity is me. I am the rock that for so long craved friction. Through the pressure of pain and the heat of progression, I grew strong. From the most common dust came the rarest of gems.

And I will continue to shine my light.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.


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