I have a very complex & extensive surgical history of the liver. Being severely symptomatic the last few years & surgical intervention has not been an option, I have now been diagnosed with SECONDARY Sclerosing Cholangitis. I am writing to you with the hope of some sort of guidance as I feel I have not been given a satisfactory "next steps" plan of action. I am only 32 with two young children & have no quality of life. I am desperate to try improve this & hoping you could please assist or help me with this! When we lived in London I was seen by the team at Royal Free but have now moved to the Midlands. I have both teams from Derby & Nottingham looking after me but have however not been able to offer me any help, instead I have now been referred to the chronic pain team but this appointment is only for the END of DECEMBER! I was told by my specialist nurse about the liver unit in Birmingham & have now requested a referral. There doesn't seem to be much information or literature available on SECONDARY Sclerosing Cholangitis & wondered if anyone is in the same situation!
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