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Chicken Pie

Porphyria

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Chicken Pie

Anyone have this and happy to share details? Symptoms etc and effect if you have surgery

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Jenflea

I don't have any advice or help but am bumping it in case someone who does sees it!

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Popper

I have EPP (photosensitivity). I avoid all sunlight as much as possible. I have a permanent disability parking permit and wear protective clothing. My life is very difficult this time of year...

 

As for surgery I have had my gallbladder removed. I had a liver biopsy 10 years ago and all is fine there.

 

Are you or your child a sufferer? Happy to share tips for living with this.

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Chicken Pie

My sibling and a parent have it but they have seizures when on anaesthetic so they can’t have it with barbiturates or something

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Popper

There are many different types of porphyria. I do not have that type of issue sorry OP. They will need to check in with their specialist I would suggest. Good luck.

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