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 on this page 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?

Your family and friends can better support you in dealing with the symptoms of AIP if they understand AIP and how it affects you. The family discussion guide explains what AIP is, what the common symptoms are, and how the condition is diagnosed and treated.

Download the AIP Discussion Guide
Talking to your family and friends about acute intermittent porphyria (AIP)

Frequently Asked Questions

  • What is Acute Intermittent Porphyria (AIP)?

    Acute Intermittent Porphyria is a rare inherited disorder caused by a partial lack of an enzyme needed to make heme, a substance that carries oxygen to all parts of your body. This enzyme deficiency results in the build-up of certain chemicals in your body, causing symptoms to develop. "Acute intermittent" means that symptoms, or "attacks," may occur for a set period of time, then go away, only to return later. Left untreated, AIP attacks can cause damage to your body such as to your brain and nervous system.

  • 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 about your specific symptoms and how they make you feel.

  • 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 about your triggers and ways to help manage them.

  • 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.

  • 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.

  • 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 repeated 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.

  • What are some good sources of information about Acute Intermittent Porphyria?

    For more information about AIP, go to Panhematin.com and click on the "Patient Support" page. There you’ll find links to online resources that educate and support people with AIP and their families.

Would you like to share your AIP journey with others but don't know where to start?

Because AIP is hereditary, it might be valuable to share your story with your female relatives. But it might be hard to find the words to describe your journey to diagnosis -- and how you manage AIP every single day. To help you write your story, two “story builders” are available. One story builder helps you share your journey to diagnosis and the other helps you share how you live with AIP. You can download these files and save them to your computer. You can then use the files to write down your story in your own time.

Download the “Sharing Your Journey to Diagnosis” story builder Download the “Sharing Your Story About Living with AIP” story builder

Suspect AIP? Track your symptoms here.

You may suspect you have AIP. This tool with help you identify and track your symptoms so you can talk to your doctor about them – and about possibly getting tested for AIP.

Download the AIP Symptom Checklist Download the AIP Symptom Checklist

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