Contact UPA at 800-868-1292 or info@porphyria.org
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:
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Question: I heard a doctor in a presentation say that people with porphyria should “look after their kidneys.” How do you do that?
Question: Can starting menopause make PCT worse/relapse? (because phlebotomies are a treatment and if you stop having periods maybe iron builds up?)
Question: I am thinking about starting Givlaari injections. What tests should I have done before and during my treatment?
Question: I have Variegate Porphyria – why am I confused during an attack?
Question: I understand that Porphyria is a rare disease and being recently diagnosed with AIP, I am trying to understand more and more. How many people in the US have porphyria? Which type of porphyria is the most common? The least common? How do you calculate these numbers?
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 is the Porphyrias Consortium? Why is it so important? What do they do?
What are enzymes and why they are important in the porphyrias?
Question: Can you recommend a list of specialties for acute porphyria patients, and a list of specialties for cutaneous porphyria patients?
Question: What extra precautions should I take when I am having my teeth cleaned or any dental work? I have CEP and want to talk to my dentist in advance.
