From our friend who lives with AIP~
To support APF Awareness week
I wrote best for Porphyria week I thought you might like it.
I suffer in silence most every day because The disease I have is so hard to explain! The frustration and fear that happens when The attack is here! The frustration comes from no one understanding the situation and the fear is there from the uneducated and the unaware, you honestly feel like no one really cares! Your blood pressure is high your muscles are weak your stomach is in so much pain you just can't sleep! You are your own advocate because this is so rare the doctors the hospitals just don't seem to care! This purple disease sometimes is so hard to bear! But I am strong and I continue along on my path for my highest and best! I learn as I go along sometimes I don't feel so strong but then I realize I have to be because this is so rare, you see! I will fight until the end and I hope with education care and love we will win!
"Remember....Research is the key to your cure!"