Rare Disease Day 2013


Rare Disease Day is here again – 28 February 2013. Congrats on their sixth anniversary!

This year’s slogan “Rare Disorders without Borders” emphasizes the need for international cooperation to find drugs and treatments for the 6,000 to 8,000 rare diseases/disorders.   The lack of scientific knowledge and quality information on each disease often results in a delay in diagnosis. The need for appropriate quality healthcare magnifies the inequalities and difficulties getting access to treatment and care.   And because of the broad diversity of disorders with relatively common symptoms, initial misdiagnosis often occurs.  In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.

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Third Cancerversary and More

Three years ago today, on February 5, 2010, I saw a 6.5 cm mass on the CT scan of my abdomen and knew that my life was suddenly changed.  Cancer.  No warning, no prep.  Just wham, down for the count.

The months of chemo, surgeries, sweat, tears and trips to Houston and the fantastic folks at MD Anderson are a blur from this vantage point. (I do have a 6-month check-up in April.)

Today, I’m much more at ease cancer-wise than at this time last year or two years ago.  I’m so very thankful to still be here!  I am a three-year cancer survivor.  There was a time that I didn’t think I’d be here to say that.

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