My Duck Companion

If you are reading this page on a Windows browser, there should be a logo on left side of the tab at top, a little green-brown-yellow blob. I first placed it there as an inside joke with myself, but the story is worth sharing. The full-size photo is at the top. (Most of this first appeared in a post from December 2013, “A Duck About Town.”)

It is a photo of a duck. The photo was taken in 2013, and it was added at the last second on the very first post written later that year. If you have looked at this web site once or a thousand times (thanks, mom!), the duck has been there, on whatever device you use, each time. It is this site’s mascot, a companion to each piece I write.
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‘Making Our Voices Heard’: Rare Disease Day 2016

Last year, when I wrote about Rare Disease Day, a friend asked, tongue firmly in cheek, “Why not have Rare Disease Day on February 29th?” I admit that when I learned about Rare Disease Day several years ago, after I was diagnosed with one, a similar joke crossed my mind. Each year, the last day in February is the date for International Rare Disease Day, and Leap Day, that quadrennial day, is a good one for us to remind the world that rare diseases are not at all rare.

Today, February 29, is International Rare Disease Day, and “Making the voice of rare diseases heard” is this year’s slogan.

Rare Disease Day was first established in 2008 by EURODIS, the European Rare Disease Organization. In 2009, the National Organization for Rare Disorders (NORD) in the United States joined the effort to educate the public.
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Upside Down

For a year I lived with a diagnosis of Friedreich’s ataxia, a genetic, neuromuscular disease whose symptoms are quite close to mine.

My symptoms: Since 2005 I have been aware, at first dimly, of a mobility disorder developing in me; today, in 2015, I walk with a cane or impressive walking stick, stiffly, like I am wearing very tight jeans; I have little sensation in my lower legs and even have moments of “body confusion” in which I think I am moving my right leg but my left leg moves. I sway when I stand and fall/walk into walls and my sense of not knowing where I am in the world contributes moments of comedy to my day. I was in my mid-30s when the symptoms began to attract my attention, which means the symptoms began to appear several years earlier.

Instead, it is very likely that I have a disease called spinal muscular atrophy, but I am grateful for that year in which I thought I had Friedreich’s ataxia. This is because all that I knew upon learning my diagnosis was my diagnosis—Dr. M, my neurologst, did not even hand me a tri-fold pamphlet, “So You Have a Potentially Life-Shortening Condition,” if such an item is even available—but there were online groups ready to embrace someone like me.
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