Porphyria Community

Meet, discuss & support other patients or families living with Porphyria. Contribute to topics, or just share what's on your mind

Porphyria cutanea tarda

I have been a porphyria patient since 2010, since in Austria there is hardly a doctor's experience with this rare disease and my porphyria excretion over the urine has been around 1390 g / 24h for a long time, I turn to you. Has anyone experience like me the total porphyrins come back to a normal value.
Mfg
Elfriede

Tihana
moderator

Dear Elfriede, it's been a while since you posted on the community but I hope you did find some help. I've tagged all the posts I could find mentioning Porphyria Cutanea Tarda, so you can get in contact with others with similar experiences. A list of different tags can be found on the right side of the Meet section. Here's the posts with the Porphyria Cutanea Tarda tag: https://www.rareconnect.org/en/community/p...

Best,
Tihana