Hand In Hand – Rare Disease Day

Rare Disease Day - February 28, 2013

Rare Disease Day – February 28, 2013

“The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” ~ Mitch Albom

“As we work to create light for others, we naturally light our own way.” ~ Mary Anne Radmacher

I have Stiff Person Syndrome, a diagnosis that afflicts one in one million.   It is estimated there are 300, possibly 400, individuals in the United States with SPS.  We are a very small community in the definition of “rare.”  A rare disease is categorized as a diagnosis of fewer than one in 200,000.  There is estimated to be 7,000 rare diseases.  (NORD information)  Collectively, one in ten individuals has a rare disease — 30 million Americans.  Living with social misunderstanding and isolation, finding knowledgeable healthcare, and facing daily struggles and challenges are issues I share with everyone diagnosed with a rare diagnosis, not just Stiff Person Syndrome.  We are the Rare Disease Community.  Together we are strong.

Jacksonville Landing - Inside Display

Jacksonville Landing – Inside Display

February 28, 2013 was very special to me.  I was involved in Rare Disease Day.  From my personal endeavor of running a 5k and honored as a guest blogger for the NORD blog (National Organization for Rare Disease), I participated with others in my area on the 28th.  Cynthia did an amazing job organizing the first-time event.  Meeting another individual with Stiff Person Syndrome was an unexpected and rewarding experience.  Sharing was an encouragement for each of us in the group along with being informative for interested onlookers.

Knowing other groups/individuals, world-wide, were doing an outeach of awareness knitted us into a global fabric of unity — one voice.  Hear us, see us… understand, care.  In Washington DC, the Rare Disease Legislative Advocates (RDLA) had several days of hearings on our behalf.  To be a participant, in the equivalent of The Rare Disease Olympics, gave purpose and meaning to my diagnosis.   With thoughts swirling in my mind for next year and the months leading to it…

Hand In Hand

Hand In Hand

Copyright © 2013

Dedicated to the Rare Disease Community — Olympians, every day, with every breath.♥

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2 thoughts on “Hand In Hand – Rare Disease Day

  1. Loved this event and all others that may have occurred on World Rare Disease Day. Attendances may have been less than expected, but less is more!!!!

  2. I loved it too! The people who did attend were amazing. Next year will be even better. It was such a blessing to be just a part of such an important day! 🙂

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