Glauciene, living with acute hepatic porphyria
AHP At-A-Glance
In the United States and Europe, approximately 5,000 people experience one or more AHP attacks annually, and approximately 1,000 suffer frequent and severe attacks.
AHP can affect people of all genders and ages, but most cases are in women between the ages of 15 and 45. Approximately 80% of people with AHP are women, while around 20% are men.
Severe, unexplained abdominal pain is the most common symptom, occurring in more than 90% of people who experience AHP attacks.
People living with AHP can wait on average up to 15 years to receive an accurate diagnosis.
AHP Inside The Body
AHP is caused by a mutation in one of the enzymes that creates heme, resulting in an overproduction of ALAS1 (aminolevulinic acid
synthase 1).
In a patient with AHP, the increase in ALAS1 results in the buildup of neurotoxic intermediates - delta-aminolevulinic acid (ALA) and prophobilinogen (PBG) - throughout the body.
ALA and PBG are harmful to nerve cells and thought to cause attacks and chronic symptoms characteristic of AHP.
These attacks can result in severe abdominal pain, neurological symptoms, muscle weakness, and skin conditions.**
What Are The Symptoms of AHP?
While most people with AHP experience severe abdominal pain during attacks, symptoms vary from person to person, and some will experience symptoms more frequently or more severely than others.
Acute attacks can be life-threatening and can last for days, while severe symptoms can lead to hospitalization and unnecessary surgeries or procedures. Additionally, some people with AHP also experience debilitating symptoms daily, even when they are not having attacks.*
*Not every person with AHP will experience all symptoms listed here. Talk to your doctor if you think you are experiencing symptoms of AHP.
**Hereditary coproporphyria and variegate porphyria primarily
AHP Backgrounder
Download this fact sheet to learn more about AHP
AHP Perspectives
The pain caused by hereditary coproporphyria (HCP) is just something I wouldn’t want anyone to have to go through.
– Nathan, diagnosed with Hereditary Coproporphyria (HCP)
Additional Information
Pinpoint AHP®
Pinpoint AHP® provides patients and their caregivers a variety of resources to help them understand the types of acute hepatic porphyria (AHP) and recognize the signs and symptoms.
Alnylam Act®
Alnylam Act® provides no-charge independent genetic testing and counseling to individuals in the U.S. and Canada who may have porphyria.
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