Monday, May 14, 2012

Beginning with Knowledge - Part 7

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.

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.


  1. looking on the web is never a good idea...lots of misinformation out there. Better to do what you and your family did and take the advice of professionals.
    Since the mapping of the human genome was completed there have been great strides in DNA research...hopefully soon they'll have much more information.

  2. Thanks Monica. Yes we learned that the hard way!! Thanks for stopping by!

  3. Hi Kathy! Monica directed me to your blog and I'm so glad she did! My husband has LGMD that we discovered in his late 20's and 7 years later we still don't know what exact form of LGMD he has (as there's so many variations). I agree, trying to research on the web can be overwhelming and scary! Our doctor always advises against it, because like she says, anyone can put anything and every case is different. Although, believe me, in the beginning (like you) we did google it all lol. I'm enjoying reading your story and didn't know much about Steinert's Disease and that it was a form of MD. I look forward to following along with your blog :)


    1. Hi Brandi,
      I'm happy that Monica referred my blog to you. It's great to connect with others who have muscular dystrophies. Hopefully by sharing our stories and discoveries, we can all learn from each other, ways to cope with these disabilities in our families.

  4. P.S. I'm having trouble with GFC (google friend connect) the last 2 days, but once it works again, I'll be sure to follow you through it :)

  5. Kathy, I saw this post for the first time today. It is an excellent series and as noted above is already helping others. Sad to see the end of this informative blog. Perhaps more in the future??

  6. I just put the post up today, Monica. It's just the last of the Beginning with Knowledge series. There will certainly be more posts following our journey.