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Hello folks,   Message List  
Reply | Forward Message #19 of 592 |
Re: Hello folks,


Hi Vikram,

Welcome to the group. As far as the prognosis of Miyoshi myopathy
goes, the symptoms are progressive, although rather slowly. Typically
patients have a significant degree of disability 15 or 20 years after
the symptoms first become noticable. Most people are able to walk to
some extent for at least 20 years after the onset of symptoms. (group
members--say something if your experience disagrees with this
assessment!)

I've never come across any statement made in the medical literature
that Miyoshi can be fatal. The major life-threatening complications
in muscular dystrophy are 1) that it affects the heart 2) it affects a
person's ability to breathe. To the best of my knowledge, neither of
these has been reported in connection with Miyoshi (nor in the type of
LGMD caused by dysferlin deficiency).

It is true that there is no treatment available at the moment. There
are, however, several research projects going on in different
countries which are likely to lead to clinical trials within the next
few years. The primary rationale behind this newsgroup and the
dysferlin website ( http://www.dysferlin.org ) is to increase
awareness, facilitate contacts, and ultimately speed up the whole
process of getting to treatments.

Best wishes to you and your brother,
Brad




Tue Nov 27, 2001 9:58 pm

baw1064
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Message #19 of 592 |
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Hello, My name is Vikram. My brother in India is suffering from Miyoshi myopathy since 1996. Several docs have tried and given up on any kind of treatment. We...
vgokhale@...
vgokhale.rm
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Nov 27, 2001
1:56 pm

Hi Vikram, Welcome to the group. As far as the prognosis of Miyoshi myopathy goes, the symptoms are progressive, although rather slowly. Typically patients...
BWilliams16@...
baw1064
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Nov 27, 2001
9:58 pm
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