ANIA’S FAMILY INHERITANCE
Ania discusses how acute intermittent porphyria (AIP) has affected 3 generations of women in her family with severe attacks and agonizing pain.Read full transcript
Ania:I knew I was affected with porphyria because it runs in my family. My grandmother was diagnosed in the 1960s, and she passed it on to my mother, who passed it on to me. I got my first attack five years ago. [Lower left of screen to read: Ania living with acute intermittent porphyria (AIP)]
Pain is the biggest thing, it's abdominal pain, its crippling, followed by nausea and vomiting. You're not able to function. You can't really work, you can’t do anything. You just, you just want to die. It is that bad.
I was told that the chances of me having further attacks was very slim, but that wasn't the case. I ended up with attacks monthly for quite a while, and this disrupted my life.
I was basically living in hospital because I was having attacks monthly. We tried all sorts of things to make that stop. For over a year, I didn't have any attacks, but I still do get them. I try not to let it affect me. In between attacks I’m well. It's just that no matter how much I pretend like they're not impacting my life, they still are, and I wish they weren't.
I have, you know, friends and family that keep me going. I think, um, without them, I probably would have given up.
When I'm healthy, I’m energetic. I'm fun. I'm bubbly. I try to stay active. When I'm not healthy, when I have an attack, I become unrecognizable.
My ideal future would be me without attacks, me without pain, me without becoming unrecognizable.Close transcript