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| Together, we're stronger! |
Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin.
There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts.
As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition.
All comments and thoughts are my own. Resource information will be linked to it's source.
To start I'll include a definition of Myotonic Dystrophy from the Let's Make Muscles Move site, here in Canada.
To learn more about this disorder please go to: Muscular Dystrophy Canada
Myotonic Dystrophy, also known as Steinert's disease, is the most
common form of muscle disease, affecting approximately one person in
8,000 worldwide. It is a disorder characterized by progressive muscle
weakness and wasting and by myotonia (difficulty in relaxing the muscles
after they have been contracted). It is a multi-system disease, typically
involving a wide range of other tissues as well as muscle.
Disclaimer
The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.
Kathy, what a wonderful idea to start this group! I know a little bit about Myotonic Dystrophy but I'm looking forward to learning much more. What a great way to share and connect with other families worldwide who also have an interest in Myotonic Dystrophy.
ReplyDeleteI'm looking forward to following your journey and your words are so true..."Together, we're strong".
Thanks Monica, as I said I've been wanting to blog about this for a long time. so I needed to just ...start!! Thanks for checking it out.
ReplyDeleteThis has made me speechless. However, I am glad that you have taken the steps to "talk" about it. My heart goes out to you and your family, but more importantly, may my words show you I care!...:)JP
ReplyDeleteThank you so much for your kind comment. How did you find me? This is a brand new blog I began. You're the first person outside my family that's seen it.
DeletePlease pass the word about this blog, on. I'm hoping it will give any others affected by this a forum for discussion and sharing.
Kathy
I will try and spread the word for you. Am always glad to connect with others who have Myotonic in the family.
ReplyDeleteThanks so much Shona for doing that. Myotonic Dystrophy is usually self limiting within families. Yet, it still has such a huge impact on the families who are dealing with this condition.
ReplyDeleteDid you find us on facebook, too?
Kathy