Everyday living with AHP

AHP is unpredictable and unforgiving. It can interfere with your life with symptoms that can disrupt everything from sleep to the ability to work and socialize. People with AHP may live in constant fear of the next attack.

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

To help you have a meaningful conversation with your doctor about AHP, create a personalized Doctor Discussion Guide by taking the Symptom Questionnaire. Make sure to bring it with you to your next doctor visit.

Take the Symptom Questionnaire

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.

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 level fluctuations during a woman's menstrual cycle
Stress caused by
- Infections
- Surgery
- Physical stress
- Psychological stress

Try to avoid:

Drinking alcohol
Smoking
Fasting or extreme dieting

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 FROM THESE INDEPENDENT PATIENT ORGANIZATIONS

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

Visit American Porphyria Foundation to learn more.

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.

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.

The United Porphyrias Association is focused on advancing disease awareness, research, and therapies in all the porphyrias.

Visit the United Porphyrias Association 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.

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 that 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
Tell them that some people with AHP may experience debilitating attacks: AHP can cause attacks, leading to absences from work, school, and social functions
- Consider telling your immediate family, supervisor, and human resources manager about the unpredictability of these attacks, so they can be supportive when they occur
Explain that some people with AHP experience ongoing symptoms: The disease can have long-term symptoms that require daily management, including diet and lifestyle changes
- Consider making your family, friends, and co-workers aware of these diet and lifestyle changes

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 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.