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  • #187818
    TITAN gene

    Hi, my son is diagnosed with central core disease, he is 4 years old and we’ve just been told he has the TTN gene.
    I’ve also read this is closely connected to cardiomyopathy and heart problems. Non urgent echos arnt going ahead at the moment and I’m so worried!
    Anyone know much about this gene
    Thanks Lorna

    Posts: 0
    Joined: 01/03/2019
    Reply To: TITAN gene

    Hello and welcome Lorna. I have little knowledge of this myself but may I refer you to

    Myotubular and other centronuclear myopathies

    There is a lot of information there. However, as you already know, you will be best served by getting information about it from a neurologist and possibly a geneticist. I am hopeful that routine, non covid appointments will be on stream soon, especially paediatric ones.


    So many love songs, so little love.

    embayweather embayweather
    Posts: 8
    Joined: 02/11/2015
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