–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 menstrual cycle 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

American Porphyria Foundation Logo

The American Porphyria Foundation focuses on porphyria education, advocacy, support services, and research.

Visit American Porphyria Foundation to learn more.

National Organization for Rare Disorders Logo

The National Organization for Rare Disorders offers educational videos and interactive webinars along with a variety of additional resources.

Visit the National Organization for Rare Disorders to learn more.

Global Genes Logo

Global Genes is your ally in the fight against rare disease. Global Genes provides helpful resources while sponsoring local and global events to help connect, empower, and inspire the rare disease community.

Visit Global Genes 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.

THE FAMILY CONNECTION

When someone is diagnosed with AHP, it is important to tell family members so they can consider getting genetic testing. Even though family members may not have had any symptoms, they may still have a genetic mutation associated with AHP. Testing will enable those who test positive for the mutation to be educated about the disease.

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

While there are currently no approved treatments to prevent acute attacks or treat the chronic symptoms of AHP, there are treatments that can be used during an acute attack. For people with AHP, there are also strategies that can help decrease the chance of having these attacks.

MANAGING ACUTE 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

BE AWARE OF TRIGGERS

  • 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 known to 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.

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