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I have a son and daughter that we thought had a disferlin deficiency. They were diagnosed about 6 years ago. Son is now 27 and daughter is 22. Last year they changed the diagnosis from a disferlin deficiency (Limb Girdle MD - Type 2B) to Calpain deficiency (Limb Girdle MD- Type 2A). It seems the medical community remains on the edge of some new technology and treatments that will help - but, nothing definitive yet. I am in US - I would be interested in what you learn in Australia about treatments or new procedures that may not be available in US. MDA has been a great resource, but seem to be pretty slow - probably just doing their due diligence. Good luck and keep us posted.
Rod H
From: dysferlin@yahoogroups.com [mailto:dysferlin@yahoogroups.com] On Behalf Of roberts_isabelle
Sent: Monday, May 28, 2007 6:12 AM
To: dysferlin@yahoogroups.com
Subject: [dysferlin] new
hello. Ive just signed up. My two daughters aged 16 and 21 have just
been diagnosed with dysferlin. our nureosurgeon doesnt know much
about the condition and tells me my girls are the only ones in the
state (south australia) who have it. Any information would be most
welcome as we dont know where to turn for help.
Isabelle
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