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Discussing AIP with Your Family

Discussing AIP with Your Family

For many people, a diagnosis of Acute Intermittent Porphyria (AIP) brings a long journey of not knowing to
an end. But living with AIP begins another journey. Your family can be a key partner in helping you to manage
the disorder. This discussion guide was designed to help you talk about AIP with your family. Here are some
questions you may be asked and some tips for answering those questions.
What is AIP?
Explain to your family that AIP is a rare inherited disorder that involves a lack of one of the enzymes needed
to make heme. Heme is the oxygen-carrying component of red blood cells and is vital for all of the body’s
organs.1 Because it is genetic, your family members may want to think about talking with their doctors about
genetic testing. Also, let them know that many people who are predisposed to the disorder may never
experience an attack.
Why does AIP cause symptoms like pain and muscle weakness?
Your family may already be familiar with the symptoms of the attacks that characterize AIP, particularly if they
have lived with you through an attack. In fact, giving a name to the disorder that has affected you may help
them understand what you have experienced. Explain that an attack is associated with an overproduction and
abnormal buildup of chemicals called porphyrins or porphyrin precursors. These chemicals normally do not
build up in the body. How this leads to specific symptoms is not known.
What can we do?
If your family has been impacted by the symptoms you have experienced, you can empower them by allowing
them to be a part of your AIP management. Tell them about the triggers that may be associated with
attacks. This may be particularly important if members of your family smoke or if part of your family culture
includes drinking alcoholic beverages. Make sure your family understands that severe dieting or carbohydrate
restrictive diets are not advised for people with AIP, because they may stimulate the production of porphyrins.
Is there treatment for AIP?
Because AIP is a condition that can result in sporadic attacks, it is important to think of treatment as a
management plan, rather than as something to be handled solely by being given medication by your doctor.
With the help of your doctor, you may be able to identify certain triggers of attacks which you will want to
address. For example, for some people attacks can be triggered by severe dieting or carbohydrate restrictive
diets or use of some medications.

“Remember…..Research is the key to your cure!”


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 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…