Overview
What is Acute Hepatic Porphyria
Acute hepatic porphyria (AHP) refers to a family of rare genetic diseases characterized by potentially life-threatening attacks and, for some people, chronic debilitating symptoms that negatively impact daily quality of life.
There are 4 types of AHP:
- Acute intermittent porphyria
- Variegate porphyria
- Hereditary coproporphyria
- ALAD-deficiency porphyria
How common is Acute Hepatic Porphyria
There are an estimated 3,000 to 4,000 patients living with AHP in the United States.
Questions regarding your Acute Hepatic Porphyria?
You can reach the Accredo Acute Hepatic Porphyria care team, anytime, day or night, seven days a week by phone or online.
24-hour Customer Service Center
Symptoms
What are the symptoms of Acute Hepatic Porphyria
Signs and symptoms of Acute Hepatic Porphyria may include:
- Abdominal pain
- Nausea, vomiting, constipation or diarrhea
- Numbness, tingling, or burning sensation in the feet or hands
- Muscle weakness
- Elevated heart rate and blood pressure
How is it diagnosed
Diagnosis can be difficult because the most common symptoms, such as unexplained abdominal pain, neuropathy, and psychological changes, are not specific to porphyria. If your doctor suspects that you have AHP, he or she will want to review your medical and family history, perform a physical exam and perform one or more diagnostic tests. When AHP is suspected, a urine porphobilinogen test should be obtained to confirm the diagnosis. Once a diagnosis is made, a porphyrin test, either urine or plasma, can be used to determine what type of AHP you have.
Medications
Acute Hepatic Porphyria
The following specialty medications are available at Accredo, a specialty pharmacy for Acute Hepatic Porphyria .
Financing Your Care
Financial assistance is available to support your drug costs including manufacturer and community programs. You may also use the copay assistance search for additional programs. Accredo specialists are available to assist in finding the right program(s) for you.
Financial Guidance
Life-saving specialty medication can be expensive. Learn how the Accredo teams help individuals find ways to afford the medication they need to survive in this video.
Find Support
There are many organizations that support research and advocacy for familial hypercholesterolemia as well as patient information on heart disease. See below for a few of those organizations.
Support Organizations
- American Porphyria Foundation | 866-273-3635
- United Porphyrias Association | 800-868-1292
- NORD (National Organization for Rare Disorders)
Government Organizations
Meet the Team
Accredo’s Acute Hepatic Porphyria team is dedicated to serving you and we understand the complexity of your condition. Our specialty-trained clinicians are available 24 hours a day, seven days a week, to answer any questions.
Why We Do It
Accredo supports patients with chronic and complex conditions and helps them live their best life. Watch our video to learn why we do what we do for our patients.