Look at the lucky people having fun. If we dare to fit in, They can go out in the sun, My oh my, watch out for the pain to begin. Scantily clad in the heat of the day. The slightest exposure can cause such pain If we did that, oh how we’d pay. That we don’t want to go out again. But, we are rare, not many like us, Feeling as though our bloods on the boil, Who when the sun comes out, And, lack of understanding for all our toil. We ‘make a fuss.’ Swelling and itching all part of the course, We have a genetic condition you see, When into the sun we are forced. And it goes by the name of, With large floppy hats, long sleeves and gloves, Erythropoietic Protporphyria aka EPP. Covered all up from our heads to our toes. Isolation is its game, What a funny sight to see, While others play and have fun, People like us who suffer from EPP. We hide indoors away from the sun.
If you have a talent to use for porphyria, please contact the APF. 1-866-APF-3635
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