Wednesday, February 29, 2012

Rare Disease Day

February 29, 2012 marks the fifth international Rare Disease Day. On this day hundreds of patient organisations from more than 50 countries worldwide are organising awareness-raising activities converging around the slogan "Rare but strong together".



Many rare disease are invisible. They include disorders of metabolism, where the body doesn't make enzymes needed to utilize nutrients essential to life, others where processing errors allow toxins to slowly destroy organs, brain and muscles and others where the body produces toxins. Over 6,000 rare diseases have been identified so far and for the most part they are incurable, and often there is no treatment.

My particular rare disease is Hypokalemic Periodic Paralysis, an inherited genetic disorder which causes temporary attacks of flaccid (rag doll) paralysis triggered by eating carbohydrates, an unusual level of physical activity, sleep or immobility, by medications (like muscle relaxants, pain meds, anesthetics and any medication which lowers the level of potassium in the blood) and by stressors such as overheating, chilling, hunger and pain.

I have lived with this disorder since birth and while it has disabled me physically it has taught me many valuable lessons about life as well. I often think of these lines from Henry Van Dyke's poem,

Reliance

Not to the swift, the race:
Not to the strong, the fight:
Not to the righteous, perfect grace:
Not to the wise, the light.

But often faltering feet
Come surest to the goal;
And they who walk in darkness meet
The sunrise of the soul.

I am honoured to be president of Periodic Paralysis International a non-profit organization which has served periodic paralysis patients around the world since 1996. Visit us today and show your support by "liking" our website!

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