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Living with AIP
Whether your attacks occur rarely or more frequently, it's good to be prepared for them. Here are some suggestions for how you can get better prepared.
How can you prepare for AIP attacks?
Have a plan in place
for AIP attacks.
Your plan should cover what to do when you have attacks - everything from calling your doctor right away, to getting to the treatment facility as quickly as possible, and knowing how to access your medical records. Having this information at your fingertips can help you get the care you need when you need it.
Download "How can you better prepare for AIP attacks?" Worksheet
This interactive PDF allows you to write in critical information, such as names and numbers of healthcare providers as well as friends and family members who can provide assistance, and much more.
Carry an AIP Medical Emergency Letter
from your doctor on your mobile device.
You should ask your treating doctor to complete a digital AIP Medical Emergency Letter that you can add to your mobile device that:
- Explains your diagnosis
- Provides instructions on what to do if you have an AIP attack
Complete the AIP Medical Emergency Letter
This digital letter is for your treating doctor to fill out in case you are being treated for an AIP attack by a healthcare provider who is unfamiliar with AIP and its treatment.
DOWNLOAD TO YOUR PHONE:
AIP Medical Emergency Letter
Instructional video: How to add the AIP Medical Emergency Letter to a mobile device
How can you meet the challenges caused by AIP?
There are many things you can do on your own and with others to stay as healthy as you can and prepare for the challenges caused by AIP. Here are some ideas.
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Try to identify what may be triggering your AIP attacks.
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Exercise moderately and eat a healthy, well-balanced diet.
Weight loss, fasting, or being on a low-carbohydrate or ketogenic (keto) diet may trigger an AIP attack, so it's a good idea to get advice from your doctor or nutritionist before starting any diet.
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Pay attention to early warning symptoms of an attack.
Some people have symptoms that occur hours or even a few days before an AIP attack. These warning symptoms may include:
- • Pain that is not abdominal pain
- • "Brain fog" or feeling mentally cloudy, confused, or unfocused
- • Irritability
- • Extreme tiredness
- • Anxiety and/or agitation
- • Headache
- • Insomnia or trouble sleeping
As with symptoms of AIP attacks, early warning symptoms may occur for many reasons that are not necessarily related to AIP. But it's a good idea to try to identify early warning symptoms you experience so that you are aware of them and can respond in a timely way.
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Learn about potential chronic symptoms that may occur in people with AIP.
Some people may have chronic symptoms between AIP attacks, or symptoms that happen occasionally or as often as every day. These symptoms are generally less severe than those that occur during AIP attacks, with pain described as dull, soreness, aching, throbbing, or burning. Chronic symptoms may include:
- • Pain in the abdomen or other parts of the body
- • Symptoms involving mental health or mood, such as tiredness, trouble sleeping, and anxiety
- • Gastrointestinal (GI) symptoms such as nausea
- • Tingling, numbness, or loss of feeling
- • Muscle pain
Chronic symptoms like these may or may not be related to AIP, so it's a good idea to talk to your doctor about any chronic symptoms you may be having.
Talking to others about AIP
Everyone's AIP journey is unique - from developing symptoms, to getting a diagnosis, and to living with AIP. One thing is almost certain: at some point, you will need to talk to others about AIP - your family, your friends, and your doctor. The resources below can help you explain what AIP is, share your story with others, and keep track of symptoms.
Not sure how to talk to your family and friends about AIP?
Talking about your AIP with family members and others who are important to you can be very helpful - both for you and for them. By telling them how you feel when you have an AIP attack and how they can help you, they will have a better understanding of how to support you and meet your needs.
Download the Living with AIP brochure
This brochure will help you understand what AIP is, how it affects your body, and how you can manage your condition.
Download the AIP Discussion Guide
This guide explains what AIP is, common symptoms, and how the condition is diagnosed and treated.
Frequently Asked Questions
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What are symptoms of Acute Intermittent Porphyria?
The most common symptom of Acute Intermittent Porphyria is severe abdominal pain. Other common symptoms include vomiting, constipation, fast heart rate, pain in different areas of your body, muscle weakness, and mental symptoms like depression or changes in behavior. During AIP attacks, you may not have all of these symptoms. Talk to your family and friends about your specific symptoms and how they make you feel.
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When are Acute Intermittent Porphyria attacks more likely to occur?
Acute Intermittent Porphyria attacks are more likely to occur when you’re exposed to things that upset your body’s chemical balance. These "triggers" may include use of hormones or normal hormone fluctuations in your body, use of certain prescription or illegal drugs, use of alcohol or cigarettes, fasting or crash dieting, infections, surgery, or stress. Talk to your family and friends about your triggers and ways to help manage them.
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How is Acute Intermittent Porphyria diagnosed?
Because the symptoms of AIP are common in other conditions and doctors are not always familiar with this rare disease, a diagnosis of AIP may be difficult to obtain. But an accurate diagnosis is critical for getting the right treatment. Diagnosis may involve laboratory tests that analyze chemicals in your urine and a genetic DNA test.
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Are family members at risk for developing Acute Intermittent Porphyria?
Acute Intermittent Porphyria is inherited, so family members of someone who has AIP have a greater risk of developing the disorder. Most people with the enzyme deficiency never have symptoms, and some people may have only mild symptoms throughout life. But it’s important to remember that symptoms can develop and become serious very quickly. Therefore, family members may want to talk to their doctors about genetic testing for AIP.
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Is there treatment for Acute Intermittent Porphyria?
Although there is no cure for AIP, treatment is available. PANHEMATIN® (hemin for injection) is a prescription medication used to relieve recurrent attacks of AIP related to the menstrual cycle in affected women, after initial carbohydrate therapy is known or suspected to be inadequate. The goal of PANHEMATIN is to reduce the chemical build-up that causes symptoms. Attacks of porphyria may progress to a point where irreversible nerve damage has occurred. PANHEMATIN therapy is intended to prevent an attack from reaching the critical stage of nerve breakdown. PANHEMATIN is not effective in repairing nerve damage that has already occurred.