If you suspect you have acute hepatic porphyria (AHP), it can be difficult to chart a path forward.
Because AHP is rare, your doctor may not be familiar with it, making it hard to get a definite diagnosis. It can help if you understand the basics of the condition and are ready to ask questions. If you do have AHP, these things will help you adjust and live better with it going forward.
Getting the Diagnosis
Many of the symptoms of AHP are common with other conditions. It also might not be clear initially that your symptoms are related because they affect different parts of your body.
Any doctor can order the tests that will help diagnose AHP. But it may take a specialist to understand the test results and make a diagnosis. The American Porphyria Foundation can help you find a doctor who works with porphyria patients. You also might consult:
- The American Medical Association
- The American Society of Hematology
- The American Association for the Study of Liver Diseases
- The American Academy of Dermatology
How to Plan for Your Doctor Visit
A few steps can help make your doctor’s appointment go smoothly:
- Have a list of your symptoms
- Have a list of the medications you take
- Bring copies of test results or have them sent to the doctor’s office ahead of time
- Ask the doctors for handouts or brochures to consult later
- Write out a list of your questions ahead of time
Questions to Ask Your Doctor
Preparing a list of questions for your doctor before your appointment can focus your thinking and help you make sure you get the answers you need.
AHP basics. It’s important to understand the causes of your condition and how it works. Questions you might ask include:
- Why do I have AHP?
- What type do I have? Can I have more than one type?
- Can I pass AHP to my children?
AHP and your liver. Make sure you understand how your condition is affecting this vital organ. Questions you might ask include:
- Is my liver affected?
- What tests might I need to test liver function?
AHP triggers. Learning more about your triggers can help you manage your symptoms. Questions to ask include:
- How do we identify the triggers for my AHP symptoms?
- How can I control my triggers?
- What about triggers I can’t control, such as getting my period?
Managing AHP. There isn’t a cure for AHP, but you can take steps to control it. Answers to these questions can give you tips that will help you plan your approach:
- What medicines will help with pain and other symptoms?
- I have other health conditions. How do we manage them and AHP together?
- How do I know when to go to a hospital during an attack?
- Are there medicines or foods I should avoid?
- Are there foods or supplements that might help my symptoms?
- What’s the long-term outlook for someone with AHP?
Tips for Living With AHP
Your doctor can help you identify what triggers your AHP symptoms. Until you isolate your specific issues, you may want to avoid common triggers. They include:
- Antihistamines
- Sedatives
- Oral birth control medication
- Hormone replacement therapy
- Tobacco use
- Drinking alcohol
- Marijuana use
- Use of recreational drugs
- Surgery
- Infections
- Getting too few calories
- Stress
How Does AHP Affect Mental Health?
Researchers have found that AHP can have a big impact on your mental health.
You may find that you share some of the feelings that people with porphyria have expressed:
- Unpredictable symptoms make it hard to plan your life
- Getting a diagnosis and explaining your condition to others is stressful
- Fearing you are a burden to friends and loved ones
- It’s challenging to have an invisible disease that most people haven’t heard of
- Treatment is physically and emotionally draining
- You have emotional highs and lows tied to your symptoms
- Sadness about changing goals and expectations for your life
- Frustration that information can be hard to find
- Not wanting to slow down, but needing to manage your illness
- Losing control over your life
- Isolation
- Worry and guilt about the cost of treatment
Steps You Can Take to Improve Your Mental Health With AHP
You can make changes in your lifestyle that may help you cope with the mental health aspects of AHP.
Diet. There’s not much evidence that specific foods improve or worsen AHP symptoms. But eating a diet focused on balanced amounts of fruits and vegetables, proteins, carbohydrates, and limited fats may make you feel better in general and keep your energy up.
Sleep. Research shows that getting proper rest can boost your mental health. Practicing what experts call “good sleep hygiene” can help you ensure a restful night. Your porphyria symptoms may make it difficult to sleep, but these steps might help:
- Avoid caffeine in the evening.
- Keep your bedroom cool.
- Try visualization or other meditation techniques to help you relax.
- Don’t lie in bed and worry – get up if you can’t sleep and distract yourself.
- Invest in a good mattress.
Exercise. Your symptoms may limit how much you can work out, but even moderate amounts of physical activity have been shown to improve mental health. Something as simple as taking a walk or climbing the stairs may have a positive effect.
How to Find Support
Even with good nutrition, plenty of sleep, and moderate exercise, you still may struggle with the mental health aspects of AHP, especially if you keep having attacks. Building a support system can help.
Counseling. You might benefit from talking to a licensed counselor. You may want to look for someone familiar with rare diseases and the particular challenges that can present.
Education. Learning as much as you can about your condition may help you manage your anxiety about it. Ask your doctor for reading material, or check with foundations associated with AHP.
Support groups. Joining a support group, either in person or online, can ease feelings of isolation that you may have. Someone who has been dealing with AHP for a while can also be a source of tips and information.
Places where you can connect with support include:
- American Porphyria Foundation
- United Porphyrias Association
- National Organization for Rare Disorders
- National Institute of Diabetes and Digestive and Kidney Diseases
Self-care. There are things you can do on your own to help ease feelings of stress and anxiety. Mindfulness techniques, such as deep breathing, yoga, and journaling, can help you to relax and process what you’re feeling so that you get a sense of control. Studies show these practices can also help you manage pain symptoms that can happen with AHP attacks. Even some time spent watching TV, listening to music, or reading a good book can help lift your mood. Spending time with friends and family can help you feel supported, which can be a big emotional boost.
Researchers continue to study AHP and apply what they learn to new treatments. New medications are tested in a process known as clinical trials. Taking part in a clinical trial could mean that you’ll have access to a new treatment before it reaches the general public. You’ll also be helping scientists understand this condition better. If you’re interested in participating in research on AHP and clinical trials of new treatments, you can learn more at ClinicalTrials.gov.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Cleveland Clinic: “Acute Hepatic Porphyria.”
American Liver Foundation: “Acute Hepatic Porphyria (AHP).”
International Foundation for Gastrointestinal Disorders: “Acute Hepatic Porphyria (AHP).”
American Porphyria Foundation: “Frequently Asked Questions,” “Finding a Doctor,” “Tips for the Doctor’s Office,” “Support and Assistance.”
British Porphyria Association: “Looking after Your Mental Health,” “Diet and Sleep Advice.”
United Porphyrias Association: “Mental Health in the Porphyrias,” “Connect UP.”
Molecular Genetics and Metabolism: “Experiences and Concerns of Patients with Recurrent Attacks of Acute Hepatic Porphyria: A Qualitative Study.”
SleepFoundation.org: “Mental Health and Sleep.”
National Organization for Rare Disorders: “Porphyrias.”
National Institute of Diabetes and Digestive and Kidney Disorders: “Porphyria.”
Michigan State University: “Self-care tools for chronic health conditions.”
Mayo Clinic: “Use mindfulness to cope with chronic pain.”
