Spotlight Porphyria
Welcome to Spotlight Porphyria where we feature all things porphyria! Including:
Porphyria Voices shares experiences, insights, and advice from the porphyria community.
What's UP Doc? Where porphyria experts take your questions.
Summing UP explains the latest research in easy-to-understand summaries
Meet your experts and advocates where we meet the people changing the world for porphyria
…and more!
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PCT and menopause
Question: Can starting menopause make PCT worse/relapse? (because phlebotomies are a treatment and if you stop having periods maybe iron builds up?)
Givlaari for acute porphyria
Question: I am thinking about starting Givlaari injections. What tests should I have done before and during my treatment?
Confusion during acute attacks
Question: I have Variegate Porphyria – why am I confused during an attack?
How many people have porphyria
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?
Acute porphyrias and heart health
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?
Porphyrias Consortium
What is the Porphyrias Consortium? Why is it so important? What do they do?
Making a health care team
Question: Can you recommend a list of specialties for acute porphyria patients, and a list of specialties for cutaneous porphyria patients?
CEP and dental care
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.
Acute porphyria and homocysteine
What should a person with Acute Hepatic Porphyria know about homosysteine and is there guidance for patients to follow?
EPP and iron supplements
Question: A lot of EPP patients are confused about taking iron supplements. What would you suggest?
Acute porphyria and pain
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.
Acute porphyria and liver health
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.
EPP and porphyrin damage
Question: We know that extra porphyrins are what makes the skin hurt when my son has an EPP reaction but are they doing any damage on the inside of the body?
Planning for an attack
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?