Archives

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.♥

Advertisements

Not Old Enough

January 2, 2012

“There must be a day or two in a man’s life when he is the precise age for something important.”
~Franklin P. Adams

Back in “my day,” turning 18 was epic–old enough for emancipation from parental rule, to legally buy and drink 3.2 beer, and to vote. Twenty-one was eagerly anticipated by the 3.2 beer crowd wishing to try the harder things in life. Overachievers.

In my early 20s, talk of retirement seemed an eternity away and pointless. In retirement visions, I pictured myself tanned and stylin’ on a tennis court with a handsome senior man, without wrinkles, firm, and athletic. Imposed early retirement was a brutal reality smack-down with my SPS diagnosis at 36. I lost my dream of the tennis court and celebration for turning 65 with a party from my co-workers, complete with presents.

The next milestone was qualifying for an AARP card and all of the membership advantages of turning 50–once again getting ‘carded.’ Deja vu, with beginning wrinkles.

I received some information in the mail about a very interesting social/intellectual/exercise program for individuals 55+…not quite ‘old enough.’ I am going to check into it anyway. Just a minor technicality, I turn 55 this year.

I am not old enough to be racking up the equivalent of cha-ching bonus points on a prescription card, watch older women walk effortlessly in a mall with envy, or have my social calender filled with doctor appointments. Nobody is.

Chronic illness or rare disease is non discriminating regardless of age, ethnicity, beliefs, or gender. NORD, (National Organization For Rare Disease), is our change.org.

Copyright © 2012