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Need Advise for Treatment

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  • July 12, 2015 at 4:55 am #75622
    Need Advise for Treatment

    Hello Team,

    My 7yr old son has been diagnosed with DMD last month. We had Genetic testing for him and it revealed that Exons 3 to 12 is missing from DNA. We have not started any treatment for him yet. We are currently staying in Chennai, India and soon planning to move to UK for the treatment.

    I need your advise regarding the treatment process and what precautions I must take before we start any treatment for him. I had heard of Genome Editing and Nonsense Mutation methods and some steroids . But Steroids don’t work in 25% cases which makes us little nervous.

    Please suggest us.

    Kind regards,
    Yogi
    Skype : yogendrabmishra

    yogendrabmishra
    Participant
    Posts: 2
    Joined: 12/07/2015
    July 13, 2015 at 2:43 pm #96711
    Re: Need Advise for Treatment

    Hi Yogi,

    I’m Rosanne, and I work at Muscular Dystrophy UK.

    Before we can give you any advice about treatments – we recommend that you get a second opinion on your Son’s diagnosis. If the exons you say are missing (3 to 12) then it might be that he has Becker muscular dystrophy, and not Duchenne. Would it be possible for you to take your son to a different doctor?

    Thanks,
    Rosanne

    Info Manager Rosanne
    Participant
    Posts: 16
    Joined: 29/07/2013
    September 9, 2015 at 2:23 pm #96712
    Re: Need Advise for Treatment

    Hello Rosanne,

    Sorry for late reply as it took us time to take another doctor opinion. We consulted another doctor and also requested to muscle biopsy for destrophine analysis and other factors but doctor refuse to do muscle biopsy as they told that in India they don’t have advanced technologies to give complete information which we are looking for and also they suggested us to start Cartico Steorid for Akshann. We are not sure if its BMD than shall we start steorid treatment for him or not??

    Please suggest for the same and suggest us the possible treatments and guidelines to us.

    Kind regards,
    Yogi

    yogendrabmishra
    Participant
    Posts: 2
    Joined: 12/07/2015
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