THE CRIPPLING PAIN OF AHP

Patients describe the debilitating symptoms they feel between and during attacks.

Introduction: 

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The following video represents the experiences of some individuals with acute hepatic porphyria (AHP). These disease manifestations may not be reflective of other individuals' presentations of AHP.

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“Describing a porphyria attack as painful is an understatement—torture comes closer,” says Desiree, patient and co-founder of the American Porphyria Foundation.

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porphyriafoundation.org

Ania:Pain is the biggest thing, the biggest symptom, and its abdominal pain. It was crippling. By crippling I mean it's like someone is holding, squeezing, stabbing. You're not able to function. You can't do anything; you just, you just want to die. It is that bad. [Lower third on screen to read: Ania living with acute intermittent porphyria (AIP)]

 Mary:You can have 10 different pains in 10 different distinct parts of your body at the same time. And all of them are different but screaming out-of-control pain. Sometimes it feels like you're being clawed at the same time as being stabbed with hot pokers. [Lower third on screen to read: Mary living with acute intermittent porphyria (AIP)]

 Colin:One thing you really have to understand about porphyria is that the pain that it causes is so severe that you are willing to go to any extreme to just make it stop. I mean just for 15 seconds, 30 seconds. You know, just please just make it go away for... just a minute. Let me catch my breath. [Lower third on screen to read: Colin living with porphyria]

 Nathan:When I think about the pain it's very excruciating. I don't know what it feels like to have a baby, but I know what it feels like to scream and cry in the emergency room. And to be a grown man in the emergency room screaming and crying... It is, it's just something that I wouldn't want anyone to go through. [Lower third on screen to read: Nathan living with heredity coproporphyria (HCP)]

 
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Greater than 90% of people with acute hepatic porphyria (AHP) attacks experience severe abdominal pain.

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To learn more about AHP, visit Alnylam’s PinpointAHP.com.

 [PinpointAHP logo and Alnylam logo]

 © 2020 Alnylam Pharmaceuticals, Inc. All rights reserved. AS1-USA-00452

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