When discussing your specific type of Porphyria with your healthcare provider, how often do you give them the acronym of your type of porphyria? AIP, VP, HCP, EPP, PCT, CEP etc.
It is important that you verbally state the entire name of your disease with your provider, rather than giving them the acronym. This could reduce the amount of errors caused in medical records daily. The relationship with your physician is built on communication! Set the tone, educate them and be assertive. There is nothing more important than making sure that your care is top priority.