|Together We're Stronger|
Monday, May 14, 2012
Beginning with Knowledge - Part 7
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.
Our Story - continued:
Finally we had a name for the problems the two smaller boys, Christin, and her father had been experiencing. It was called Myotonic Dystrophy. We were told this was one of a vast number of neuromuscular disorders, under the larger name Muscular Dystrophy.
It was such a scary thought, that this disorder, would be associated with our family. Before we did the research, horrible thoughts ran through our minds. Searches on the World Wide Web, turned up even more, shocking stories.
It was at this point that help began to come to our daughter and her family. And with the direction of professionals, we were able to sort out the important facts.
What about research?
Researchers are trying to determine how the expansion of the repeated section of DNA in genes on chromosome 19 or chromosome 3 destabilizes muscle cell function. Other scientists are studying the actual process of muscle degeneration in myotonic dystrophy and also, the effect of myotonic dystrophy on other parts of the body.
For more information on this subject, please refer to: Muscular Dystrophy Canada
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.