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French Gene Splicing

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  • September 23, 2010 at 6:45 am #73227
    French Gene Splicing

    I had an appointment with my neurologist recently and he was very excited about some recent developments in France concerning gene splicing for muscle conditions. I have Myotonia Congenita and he reckoned that if the current research is successful then it could have a massive impact on people like me, that is, anyone with a genetic muscle mutation!

    Has anyone else heard about this?

    TygerTyger
    Participant
    Posts: 283
    Joined: 08/09/2010
    September 23, 2010 at 11:17 am #76749
    Re: French Gene Splicing

    Hi TygerTyger,

    I can’t think of anything that exactly fits your description but there was some success with gene therapy in France recently for a blood disorder:

    http://www.newscientist.com/article/mg20727784.300-blood-disorder-cured–a-first-for-gene-therapy.html

    Could this be it do you think? If you send me a direct message with the doctor’s name then I could find out some more specific information. I’d be very interested to know about it too!

    Kristina.

    kelvidge
    Participant
    Posts: 113
    Joined: 07/09/2010
    September 23, 2010 at 5:54 pm #76750
    Re: French Gene Splicing

    I am seeing my Neurologist next Feb for my annual checkup, i will be sure to ask him about this. I asked about Hyperbaric therapy last time i saw him but he was unmoved, pity that is not available as the National Hyperbaric Centre is not far from me.
    I hope for a cure mostly for my 2 daughters who are both carriers but i would still be very interested in anything that might help me.

    ranald
    Participant
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    Joined: 05/09/2010
    September 25, 2010 at 9:13 am #76751
    Re: French Gene Splicing

    Thanks for replying Kelvidge and Ranald.

    My doctor was not specific unfortunately and I got carried away with his genuine excitement. He may see a future opportunity to be involved in this treatment through me?

    I’ve not yet found anything on the web about it but I have no reason to doubt his sincerity so I’ll keep looking and post my findings here. :)

    TygerTyger
    Participant
    Posts: 283
    Joined: 08/09/2010
    May 27, 2011 at 5:33 pm #76752
    Re: French Gene Splicing

    My son has a mutation in the ACTA 1 gene which has caused congenital fibre type disproportion. We do not know of anybody else with the condition and would be interested to hear from anybody with similar conditions.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    May 31, 2011 at 1:20 pm #76753
    Re: French Gene Splicing

    Hi,

    We have a service called MD Links which can help to put you in contact with other people with the condition. More information here:

    http://www.muscular-dystrophy.org/how_we_help_you/peer_support/md_links

    If you would like to join MD Links please contact us on 0800 652 6352 or info@muscular-dystrophy.org

    You might also be able to find people on this forum more easily if you put the name of the condition in the subject line. You could make a new topic. Perhaps the “Its my Life” section of the forum might be the best place because that has the most visitors.

    Hope this helps,
    Kristina.

    kelvidge
    Participant
    Posts: 113
    Joined: 07/09/2010
    June 4, 2011 at 9:09 am #76754
    Re: French Gene Splicing

    Thanks Kristina, Im new to this so appreciate any advice.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
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