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.
One of the tricky things about porphyria is, you never know how you’re going to feel from day to day. On a bad day, I literally spend all day on the couch. It's just the thought of doing that hurts.— Sharon, living with AHP
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.
Be aware of:
- The way some drugs in certain medication classes may affect AHP, including:
- Seizure medications
- Migraine Drugs
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
- Physical exhaustion
- Emotional exhaustion
Try to avoid:
- Drinking alcohol
- 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
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.
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.
THE FAMILY CONNECTION
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:
- 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 sudden 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 these 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
- Be sure to make your family, friends, and co-workers aware of these diet and lifestyle changes
Management options for AHP
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 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.