PSC and transplant

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  • #16420

    Sally
    Participant

    Hi all

    I was diagnosed 4 months ago, stage 2 and had resection and am currently taking capecitabine.  My recent scans show NED but I know it’s a matter of time before this changes.

    I know I am not eligible for transplant in the UK because of my PSC, but I wondered whether anyone had raised funds to go to the US for transplant as they have had great success with their Mayo protocol? And if so how did you start this process/do I need UK Dr to send referral and if so who to…etc.I believe I may fit the criteria and would be able to raise funds, but have no idea how to even start this process.  I am 37 and have 2 babies, dying any time soon is not an option!!

    Thank in advance

    Sally

    #16424

    Michaela
    Moderator

    Dear Sally,

    Thanks for coming into the Forum and I can also see you have posted onto the Facebook Support group.

    Hopefully, one of the members on here or the Facebook group will be able to come in and offer some advice/support.

    Kindest regards

    Michaela

     

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

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