Written for the April 2011 Emergency Medicine News Letter
@ my Regional Medical Center
April 16- 23, 2011 is Porphyria Awareness Week
As a member of the American Porphyria Association (www.porphyriafoundation.com ), and as an individual with Acute Intermittent Porphyria (AIP), I have been asked to raise awareness of this rare disease. AIP is a genetically inherited disease that alters specific enzymes of the heme synthesis pathway. In times of crisis the accumulation of neurotoxic byproducts cause a cascade of potentially life threatening events including, but not limited to: pain, nausea and paralysis. AIP also has a significant relationship with the liver. AIP is treated with carbohydrate loading, IV Dextrose, IV Morphine (for pain) and most importantly IV PANHEMATIN (http://www.aiporphyria.com ).
It has been a long journey to diagnosis and treatment, confirmed by genetic testing at Mount Sinai Hospital in NYC. To raise awareness at our medical center I will be distributing AIP information (including a free online CME opportunity) outside of the upcoming ED Staff Meeting 4/14/2011.
Thank you for your time and professional consideration.
Best Wishes~
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