What It's Like to Test Positive for a Rare Disease and No One Understands How You Feel

  • Oct 19, 2020

This article really hit home with me.  Before I was diagnosed with Porphyria (AIP) and a confirmed family history of it.  I presented in a more chronic way.  Also with cold, sinus, gut, pain in the lower  extremities

I still lived at home and just as things were progressing in my health my mom was really sick with endometriosis she had to work full time and so did my father so that left me a teenager with a very young sibling.  The tension and the silence in the house started in.  Every once in awhile I would see my mom dragging herself on the floor, my Dad didn't seem to to understand or care.  I really don't know.  In the end my parents got divorced.  We did the best we could. Shortly within a few years I got married.  I remember the day of my marriage but I was so so sick and I didnt know why? Fast forward to 2007 I was finally diagnosed with AIP.  This article is about another disease but when you are diagnosed with a rare disease you may question things and feel the way Erin did.  I hope you enjoy the short article.