Forum Replies Created

  • lizzy

    Member
    October 24, 2019 at 12:55 pm in reply to: The other 10%…. FDA approves Trikafta

    Thanks for replying Jenny. Coincidentally a deal on Orkambi/Symkevi was agreed today in England. So much good news, after too long a wait.

    I will be shouting loudly so the remaining 10% are not forgotten too. Just blogged about this here…

    http://mymerrymolyworld.blogspot.com/

    Have a great day, and good luck on the new drugs x

  • lizzy

    Member
    October 22, 2019 at 11:52 am in reply to: The other 10%…. FDA approves Trikafta

    My son (14) is one of the 10%. He has two, rare, severe (class 1) mutations.

    I’ve been to protests in London as NHS England has yet to approve Orkambi, let alone a triple combo, despite these not being a solution for Isaac. It’s certainly a very wonderful and exciting time for the CF community! But I would be lying if I said that I wasn’t concerned that the 10% would be left behind. Our consultant says she has high hopes that Vertex (or others) wouldn’t let that happen, they will want to say that they provided the first treatments aimed at the underlying cause of the disease; for all. I hope she is right.

  • lizzy

    Member
    March 5, 2019 at 2:11 pm in reply to: Mum of an awesome teen with CF

    Hi Luisa, the link you have given above for parents and caregivers does not work for me…. is this forum now open? Thanks!

    http://mymerrymolyworld.blogspot.com

    lizzy x

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