–Candace, living with AHP

Living with AHP

Everyday living with AHP

AHP is unpredictable and unforgiving. It can take over your life with symptoms that can disrupt everything from sleep to the ability to work and socialize. Even those who rarely experience attacks may live in constant fear of them.

Although this is a lifelong disease, it's important to know that there are things you can do to reduce your chances of attacks and have a better quality of life.

Person diagnosed with acute hepatic porphyria

To help people have meaningful conversations with their doctor about AHP, a Doctor Discussion Guide is available that you can download and complete before your next doctor visit.

Avoiding Triggers Can Make a Difference

Common triggers for attacks are shown below. Since triggers can be different for every person, there may be others not listed here.

Triggers to be aware of

Be aware of:

  • The way some drugs in certain medication classes may affect AHP, including:
    • Seizure medications
    • Antihistamines
    • Hormones
    • Migraine Drugs
    • Sedatives

    Speak with your doctor if you have any questions about your medications and AHP.

  • Hormone levels, including levels of estrogen and progesterone
    • These hormones fluctuate the most during the 2 weeks before a woman's menstruation begins
  • Stress caused by
    • Infections
    • Surgery
    • Physical exhaustion
    • Emotional exhaustion
Lifestyle triggers to avoid

Try to avoid:

  • Drinking alcohol
  • Smoking
  • Fasting or low-carb diets

Get the help you need

Talk to your healthcare team

If you have AHP, it's important to keep communication lines with your healthcare team open. Sharing your symptoms and concerns can help them tailor a management plan that is right for you.

Seek information and support

Canadian Association for Porphyria Logo

The mission of the Canadian Association for Porphyria/Association Canadienne de Porphyrie is to deliver evidence-based information and support to patients with porphyria, their families, health care providers and the general public across Canada, and to achieve standards and evidence-based comprehensive care for all people with porphyria throughout their lifespans.

Visit the Canadian Association for Porphyria to learn more.

Canadian Organization for Rare Disorders Logo

CORD is Canada's national network for organizations representing all those with rare disorders.

Visit the CORD - Canadian Organization for Rare Disorders to learn more.

Global Porphyria Advocacy Coalition Logo

The Global Porphyria Advocacy Coalition (GPAC) operates as an umbrella organization for national porphyria patient advocacy organizations, representing all types of porphyria.

Visit the Global Porphyria Advocacy Coalition to learn more.

Reach out to family

With a disease like AHP, it can be helpful if family and/or close friends understand the disease so they know how to best support you. Be sure to explain to the people close to you the importance of steps you're taking to avoid triggers.


When someone is diagnosed with AHP, it is important to tell family members so they can consider getting genetic testing. AHP is a genetic inherited disease, so family members of someone who has AHP may also have inherited the altered gene responsible for the disorder. While most people with an altered gene may never have symptoms, they are however at risk of having an attack, or at risk of complications associated with elevated levels of ALA and PBG.1 Knowledge of genetic risk of AHP may enable people to make informed decisions regarding lifestyle and medications with the intent to prevent attacks and complications of the disease.2 Therefore, family members of someone who has AHP may want to talk with their doctor about genetic testing for AHP.3

The following resources can help you learn more about the genetic risk of AHP and have these discussions.

Talking with others about AHP

Consider talking with family, friends, and possibly co-workers about AHP. Explaining AHP to them can help them understand the unique burden of this debilitating disease. It can be challenging but here are some tips than can make those conversations easier:

Person discussing acute hepatic porphyria with friends and family
  • Start by saying that AHP is real: Although rare, with painful symptoms that mimic other diseases, AHP is a real genetic disease that can disrupt one's daily life
    • Some may feel that a person with AHP is exaggerating or being overly dramatic. Explain to family, friends, and co-workers that AHP is a rare, genetic disease. It is often confused with other diseases. This can help them understand the unique burden of AHP

Management options for AHP

For people with AHP, there are also strategies that can help decrease the chance of having these attacks.


  • Severe, acute attacks often require hospitalization or urgent medical attention
  • Attacks can be treated by the use of intravenous (IV) hemin therapy and/or IV glucose
    • Intravenous means when a medicine is delivered directly into a vein
  • Your doctor may also prescribe medications to treat specific symptoms of an attack such as beta-blockers for high blood pressure and rapid heartbeat, an antiemetic for nausea and vomiting, and pain medication
  • In extreme cases, liver transplantation may be considered


  • There are certain attack triggers, including:
    • Stress caused by infections, surgery, physical or emotional exhaustion
    • Alcohol consumption and smoking
    • Fasting or low-carb diets
    • Hormones and hormone fluctuations (including estrogen and progesterone)
    • Certain medications may be unsafe in AHP
  • Some drugs in certain medication classes are known to trigger attacks in people with AHP, such as: seizure medications, antihistamines, hormones, migraine drugs, and sedatives. Partner with your doctor to review the medications known to trigger attacks and determine if you need to stop or change certain medications you may be taking.

It’s important to talk to your doctor if you are experiencing symptoms
of AHP or to learn about management options for AHP.

More Helpful Resources

AHP = Acute hepatic porphyria; ALA = Aminolevulinic acid; PBG = Porphobilinogen

References: 1. Ventura P, et al. Intern Emerg Med. 2009;4:297-30. 2. Anderson KE et al. Ann Intern Med. 2005 Mar 15;142(6):439-50. 3. Balwani M. Clin Adv Hematol Oncol. 2016;14:858-61.

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