Hi all, I am chatting with a mum in the USA who has a very ill daughter and who is also fighting the lack of correct information regarding porphyria attacks and the use of porphyrins as a diagnostic tool. She has written me a letter stating her daughters type of Porphyria (AIP in this case) and the fact that she has been successfully treated with hematin and glucose YET the doctors have now reneged on her diagnosis DESPITE a genetic confirmation, and she is beside herself with worry over what to do if she has another attack. If anyone would be so kind as to send me a letter outlining their porphyria type and thei history with relation to porphyrin tests during an acute attack, I would greatly appreciate it. I am gathering together a series of articles and would love for peoples personal experiences to be included. Everyones doctors working in isolation will not do the trick. There needs to be an awareness of just HOW MANY people suffer an attack without the precursors in the urine so that it triggers a rethink on the whole scenario of testing. She sent me the abstract below.
Posted on: Fri, 03 Oct 2014 06:14:35 +0000
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