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British Liver Trust
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Porphyria cutanea tarda

Hi, I don't post much but always lurking and learning. Some of you may remember a post I put on about red urine with no blood in it. Well I finally convinced the gp to test me for porphyria after id consulted Dr google and gone through a battery of tests(Some quite invasive), coming to nothing. Blood, stool and urine all taken fresh and bottles wrapped in foil(looked like bbq sausages 😂). Anyway results are in and its porphyria cutanea tarda or vampire disease, some of you may have read of it? Its very odd and a bit rare,1/25,000? I don't fully understand it but as I do, its something to do with my liver and haem synthesis and a build up of little buggers called porphyrins which get released under my skin making the skin on my hands,face and forearms when exposed to sunlight, fragile (tears if I catch it), blister (I'm a chef, assumed they were burns🤔) and grow hairy, even on my face😕(assumed it was hormones). They also build up in my stools, plasma and urine turning the latter a lovely strawberry colour ☺ hence my earlier post, it could also be causal In my fatty liver and puts me at more risk of cirrhosis and liver cancer as I understand it? Anyway, next steps are to be tested for genetic haemochromatosis and hep c as these can be causes or it may be genetic. I am terrified of all the causes because of what it could mean for my kids...but we'll deal with that as and when, I've got what I've got and worrying won't change it! I wanted to write this post to keep anyone interested updated, also there is nothing on this site on this subject so if anyone else diagnosed looks they will find this post and know they aren't on their own and maybe get in contact with me ☺ there is not much out there on it, there is a page on British liver trust website though. if anyone knows anymore than me on the subject also feel free to enlighten me! 😂

Thanks for reading this long winded post ☺

Stacie. Xxx


3 Replies

Hi . This organisation will be helpful for you . porphyria.org.uk/?page_id=267. There is also an American organisation . I have know one person wth this , took them ages to diagnose. He is now well and fighting fit . Has been a climb...


Hi Stacie,

I've just been reading your post and have been reading up about porphyria cutanea tarda.

Most likely I've just visited a few of the sites you've been to on Dr Google. I'm glad in a way that you've managed to get to the bottom of your...


Hi Richard, I hope you are well? Thanks so much for your reply ☺. I am relieved at the diagnosis in a way as I knew things weren't right. I am a bit up and down about it to be honest, I am more scared of the possibility of hep c or...

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