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Two research teams make steps towards a treatment for FSH

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  • August 25, 2011 at 11:16 am #73900
    Two research teams make steps towards a treatment for FSH

    New research news story up on the website today:

    http://www.muscular-dystrophy.org/research/news/4356_two_research_teams_make_steps_towards_a_treatment_for_fsh

    This also has implications for many other conditions such as myotonic dystrophy, oculopharyngeal muscular dystrophy (OPMD), Charcot-Marie-Tooth disease and some types of limb girdle muscular dystrophy, congenital muscular dystrophy and congenital myopathy.

    Any questions/comments, fire away!
    Kristina.

    kelvidge
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    August 25, 2011 at 2:49 pm #81869
    Re: Two research teams make steps towards a treatment for FS

    Excellent news … I will have to read and digest before coming up with any questions. Having serious brain fade today.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
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    September 6, 2011 at 2:07 pm #81870
    Re: Two research teams make steps towards a treatment for FS

    AS having FSH this is brilliant news!! I hope in continues!!

    Winged Warrior

    DarthJohn
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    September 11, 2011 at 5:55 pm #81871
    Re: Two research teams make steps towards a treatment for FS

    Hi my name is Adi was diagnosed with a mild case of FSH back in 2007 after a few years of trying to figure out why I had muscle loss and strength loss on right hand side of my chest which now moved over to the left side too.

    I’m 30 years old I do weights and train and try to keep healthy just wanted to know is there anything I can do take test’s or maybe meet with you or anyone to find out a bit more or if the research teams need people to do research on.

    When diagnosed I was told there is no treatment and that not much information is out there only thing to do is to join muscular dystrophy campaign and wait for updates.

    This seems to be the best update such great news and hope for me I hope research terns into treatment to help the people out here who suffer from FSH and other muscle disorders keep the great work up.

    Please contact me if you think I could be of any assistance.

    Regards Adi Al-Tak

    adialtak
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    Joined: 11/09/2011
    September 12, 2011 at 10:54 am #81872
    Re: Two research teams make steps towards a treatment for FS

    Hi Adi,

    Nice to hear from you. The next step to getting involved will be to join a patient registry. We are involved in setting up a FSH patient registry in the UK. We are trying to get this off the ground at the moment, but once it is set up, it would be a good idea for you to join. This will allow the researchers to gather information about people with FSH so they can plan clinical trials and then they will contact people to take part through the registry. We will publicise it widely when the registry is launched.

    This latest breakthrough is still a fair way away from reaching clinical trials, but we have our fingers crossed that it won’t be too long.

    If you want to discuss, feel free to give me a call. I’m in the office on Tuesday, Wednesday and Friday this week.

    Best wishes,
    Kristina.

    kelvidge
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    October 19, 2011 at 1:28 pm #81873
    Re: Two research teams make steps towards a treatment for FS

    Hi sorry this might be a silly question but is there anything we can take drug or eat or not eat to help. Would it be worth taking an imupro test 100plus which tells you foods you’re allergic too.

    adialtak
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    October 20, 2011 at 9:41 am #81874
    Re: Two research teams make steps towards a treatment for FS

    Hi Adi,

    There aren’t any specific drugs or foods that can help with FSH but it is important to keep fit and healthy. So the training you do is good to keep up.

    As for allergy tests, this isn’t going to help with FSH as it isn’t an immune condition or related to allergy. However if you suspect you have an allergy because you have symptoms such as trouble with your digestion, especially after eating certain foods you should talk to your doctor about being tested for food allergies as this might improve your general health.

    I hope this helps.

    Best wishes,
    Kristina.

    kelvidge
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    January 12, 2012 at 2:44 pm #81875
    Re: Two research teams make steps towards a treatment for FS

    Let me digest it first then I’ll fire away questions, hope it has enough detail I’ll satisfy my hunger. Anyways! this is big news for me. I pray it will yield result more than what I am expecting. Thanks Kristina.

    lucymatt10
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    February 7, 2012 at 7:48 pm #81876
    Re: Two research teams make steps towards a treatment for FS

    my 8 year old Daughter Olivia suffers FSHMD,we live in Co-Antrim Northern Ireland, she was diagnosed at the age of 2 years and is also profoundly deaf in 1 ear and moderately in the other, do you think her deafness is linked to her FSHMD? And if so would this new discovery possibly help to cure her deafness?? Thankyou

    joel75
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    February 13, 2012 at 2:59 pm #81877
    Re: Two research teams make steps towards a treatment for FS

    Dear joel75,

    Yes hearing problems can be associated with FSHD. A report was published in 2010 and one of the clinical management recommendations was that all children/infants diagnosed with FSHD should be referred to a hearing specialist:

    http://www.muscular-dystrophy.org/research/news/2481_report_published_on_fshd_standards_of_care_and_clinical_trial_readiness

    It is not known whether the potential therapies currently being researched in the lab would be able to reverse the damage to your daughter’s hearing. The researchers testing similar technology for Duchenne muscular dystrophy say that all they are hoping for is to be able to slow or halt the progression of the disease. Regeneration or repair of already existing damage would be a very welcome bonus. Only time will tell how effective these treatments will be. Sorry that I can’t be more specific, but we all hope that clinical trials for FSHD will start in the not too distant future to give us answers to these type of questions.

    Best wishes,
    Kristina.

    kelvidge
    Participant
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    Joined: 07/09/2010
    March 4, 2012 at 5:28 pm #81878
    Re: Two research teams make steps towards a treatment for FS

    Now a days I am working on building biceps and looking for muscle building tips. My question does building muscle fast has any side effects? Can a fast muscle builder have FSHD?

    sarah82
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    Joined: 04/03/2012
    March 13, 2012 at 2:10 pm #81879
    Re: Two research teams make steps towards a treatment for FS

    Hi sarah82,

    You might be interested in our article on exercise, page 14 here:

    http://www.muscular-dystrophy.org/assets/0001/2819/Target_research_no2_spreads.pdf

    Kristina.

    kelvidge
    Participant
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    Joined: 07/09/2010
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