experts in action

Porphyria Experts in Action

The United Porphyrias Association is proud to work closely with the porphyria experts on the UPA's Scientific Advisory Board and at the Porphyrias Consortium. 

We're pleased to introduce our Experts in Action where we'll feature:

  • Summing UP: Easy-to-understand summaries of recent and important scientific research
  • What's UP Doc? Where the experts answer your questions
  • Meet your experts: Where we get to know the experts a little better
  • Special events and recordings
  • New research opportunities
  • And more....

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What's UP Doc - Confusion during acute attacks
What's UP Doc? Confusion during acute attacks
May 20, 2022
By Dr. Karl Anderson

Question: I have Variegate Porphyria – why am I confused during an attack?

What's UP Doc? Acute porphyrias and heart health
What's UP Doc? Acute porphyrias and heart health
April 29, 2022
By Dr. Herbert Bonkovsky, Dr. Karl Anderson

Question: Can having tachycardia (fast, irregular heartbeat) due to AHP cause long term health issues? If you have tachycardia from AHP, are there things you can do to protect your heart?

What's UP Doc? Porphyrias Consortium
What's UP Doc? Porphyrias Consortium
April 22, 2022
By Dr. Hetanshi Naik

What is the Porphyrias Consortium? Why is it so important? What do they do?

What's UP Doc? Enzymes and porphyria
What's UP Doc? Enzymes and porphyria
April 15, 2022

What are enzymes and why they are important in the porphyrias?

What's UP Doc?  Making a health care team
What's UP Doc? Making a health care team
March 25, 2022
By Dr. Bruce Wang

Question: Can you recommend a list of specialties for acute porphyria patients, and a list of specialties for cutaneous porphyria patients?

What's UP Doc? Acute porphyria and homocysteine
What's UP Doc? Acute porphyria and homocysteine
March 11, 2022
By Dr. Manisha Balwani, Dr. John Phillips

What should a person with Acute Hepatic Porphyria know about homosysteine and is there guidance for patients to follow?

What's UP Doc? Acute porphyria and pain
What's UP Doc? Acute porphyria and pain
February 25, 2022
By Dr. Mohamed Kazamel

United Porphyrias has received many questions about pain, most related to pain in the Acute Hepatic Porphyrias (AIP, VP, HCP, ADP). This week, we are addressing Pain in Acute Hepatic Porphyria in depth.

What's UP Doc?  Acute porphyria and liver health
What's UP Doc? Acute porphyria and liver health
February 11, 2022
By Dr. Herbert Bonkovsky

Question: My daughter (now age 26) has AIP. How will acute porphyria attacks impact her liver as she ages? She was diagnosed a few years ago and her last attack was several months ago. 

What's UP Doc? Planning for an attack
What's UP Doc? Planning for an attack
January 28, 2022
By Dr. Karl Anderson

Question:  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?