Planning for an attack

What's UP Doc?
Written By Dr. Karl Anderson

What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board.

Hi, I was diagnosed with acute intermittent porphyria about two years ago. I’m always worried about my next attack. What plan should I have in place in the event of another attack? At what point do you think I shouldn’t try to go it alone without help?

Thank you for your question! According to Dr. Karl Anderson, Porphyria Expert (University of Texas Medical Branch, Galveston, TX) here are the main items you should have in place. Remember to reach out to the UPA if you need support!

  1. Be sure the AIP diagnosis is confirmed by a substantial PBG elevation in the past and DNA studies

  2. Make an agreement with your physician about plans for managing an attack

  3. Call your physician before you decide to go to the hospital, so he/she is informed and agrees

  4. Go to hospital for any severe manifestations, or inability to maintain an oral intake.

Thank you to Dr. Anderson for this What's UP Doc? answer! Do you have a question for a porphyria expert? Send it to info@porphyria.org.

 

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Dr. Karl Anderson

Dr. Anderson is a graduate of the Johns Hopkins University School of Medicine, completed residency in internal medicine at Vanderbilt University Hospital and the New York Hospital-Cornell Medical Center, followed by training in gastroenterology also at Cornell. He was a member of the faculty at the Rockefeller University, Cornell University Medical College and New York Medical College before coming to the University of Texas Medical Branch at Galveston in 1987, where he is a Professor in the Department of Internal Medicine (Division of Gastroenterology and Hepatology).

He directs the Porphyria Laboratory and Center at UTMB, which is part of the NIH-supported Porphyrias Consortium. He is an active clinical investigator with support from the NIH, FDA, foundations and industry. His research focusses on the human porphyrias and their treatment.

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EPP and porphyrin damage