For people with symptoms of AIP, finding a doctor with experience in diagnosing and treating AIP is key to getting a correct diagnosis. But finding a doctor can be difficult since AIP is rare.
Many doctors may not be familiar with the symptoms of the disease or how to diagnose it.
People with AIP may have a wide range of symptoms. These symptoms may send them to many different types of doctors who may offer many different diagnoses. In fact, it’s common for people to have symptoms for 10 years or more before getting a correct diagnosis of AIP.
Find a Porphyria Expert
The American Porphyria Foundation (APF) keeps a list of more than 4,000 doctors who know about AIP and other porphyrias.
You can also ask your doctor to refer you to a doctor with more extensive knowledge of AIP.
If getting to such a doctor is not possible, find a doctor who will spend time putting together the pieces of your personal puzzle. You can encourage your doctor to reach out to a doctor with greater knowledge of AIP, if needed. Some of these doctors will consult with other doctors to offer guidance and assist with diagnosis. If you think you may have AIP, find out as much as you can about the disease so that you can work together with your doctor to determine your diagnosis.
Before seeing your doctor, complete this symptoms checklist. You’ll get personalized information about your symptoms that you can use to start a conversation with your doctor.
Complete the symptoms checklistIt’s very important to work with your doctor to get properly tested for AIP. A series of tests can be done by your doctor that will determine whether or not you have AIP:
If your doctor thinks you may have AIP, he or she will order a PBG urine test. During AIP attacks, PBG levels in urine are much higher than normal. A PBG urine test at or near the time of symptoms will help your doctor diagnose AIP.
If the PBG level in your urine is high, more lab tests will show whether you have AIP or another acute porphyria.
A DNA test done by specific laboratories can identify whether you have an affected gene that is associated with AIP.
If you get genetic confirmation that you have AIP, your relatives may also want to learn if they have the affected gene and are at risk of developing symptoms.
Getting an accurate diagnosis is the first step toward managing your symptoms, which is essential for your health. There are many things you can do—both on your own and with your doctor—to help manage the symptoms of AIP.
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