NEWS UPDATES

This years annual conference on the Collagen 6 related diseases and other Congenital Muscular Dystrophies will be held in Philadelphia Aug 14-15, 2010.  Please visit the curecmd.org website for registration info.

First paper published documenting autosomal recessive occurence of Bethlem Myopathy.

www.nmd-journal.com/article/S0960-8966(09)00650-6/abstract

Our email address has changed.  If you have been emailing to mike@bethlemmyopathy.org please note that address no longer exists.  Please use the contact page to send an email to our new address.

Please see the test diagnosis page to find an update on some new information.  I apologize for not updating this site in some time.  Unfortunately some additional complications (as noted) on the test diagnosis page have kept me busy with tests and trying to get used to a BiPAP machine.(not fun, trust me!!!)

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WHO I AM...

Hi, my name is Mike Newton and in 2006 I was diagnosed with Bethlem Myopathy. I have started this website in the hopes to bring together those of us that suffer from this very rare disease and to help push for a cure and or treatments. This site contains links to current information about the COL6A diseases and a chat forum for users to post comments.

My Journey
Around 1972 my brother and I started showing signs of some sort of disorder. We were primarily toe walking and had limited strength and stamina. Our parents consulted with our pediatrician who referred us to a neurologist. Our first diagnosis was Kugelberg Weilander disease and in 1976 both my brother and I underwent bilateral heel cord lengthening. Our toe walking had become so bad that surgery was a necessity.