Thursday, February 28, 2013

Rare Disease Day 2013

Today, February 28th, 2013 is Rare Disease Day! Even though you have probably never heard of Postural Orthostatic Tachycardia Syndrome before visiting my blog, it really is not rare! It is, however, rarely diagnosed. Due to its volatile and poorly understood  nature, exact statistics of individuals affected by POTS/ Dysautonomia are unavailable, but  many experts estimate that 1 out of 100 people have POTS.

There are several  forms of Dysautonomia, many of which are rare. Some forms are connected with rare genetic conditions or with rare autoimmune diseases. Approximately  30 million Americans are afflicted with a rare disease. Medical professionals are taught "When you hear hoof beats, suspect a horse, not a zebra." Therefore, patients who present with odd symptoms or diseases are referred to as zebras because they don't fit traditional medical descriptions. Their symptoms (hoof beats) are not connected with the more common illness patterns (the horses).

Just medical jargon for FREAK, I guess ;)

Sydney the Zebra/ Freak




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