Monday, May 7, 2012

Beginning with Knowledge - Part 6

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:

Before Aiden was born, we had many unanswered, family health, questions. Why was Brian not meeting the 'normal' milestones of holding his head up, sitting up, standing, walking and talking?
Christin, Brian's Mom, had trouble opening jars and had stiffness in her hands. She thought she had arthritis, at the young age of 24. 

David, her father had cataracts at 39, a heart attack at 48, premature balding, difficulties swallowing some foods, gastroenteric problems and severe apnea. 

Each one of these things, of course, were investigated and treated by the proper 'specialist' in each area.  But not until Aiden was born did it all begin to come together and begin to make sense to us.

 What are the symptoms of Myotonic Dystrophy?

Cataracts may develop frequently in people with myotonic dystrophy. They develop fairly slowly, but can occur in people as young as 30 years.

Myotonic dystrophy may affect the heart muscle. A person my experience palpitations (rapid, bounding pulse) or dizzy spells, or thy may have no symptoms whatsoever.

A person who has myotonic dystrophy may have difficulty swallowing. This is due to involvement of smooth (or involuntary) muscle. Cold foods may cause some individuals to choke.

Other potential problems may include bowel problems (constipation and stomach pain) and uterine problems in females. Affected individuals may be susceptible to respiratory problems such as infections and shortness of breath.

Premature balding may occur in some males, while females my experience thinning of hair. In addition to the symptoms of the adult form, symptoms of the congenital form of myotonic dystrophy include: difficulty breathing, sucking and/or feeding, weakness in virtually all muscles and slowness and difficulty in developing language and, motor skills.

This information comes from: 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. Kathy, thank you for sharing this information with us. Maybe someone reading this blog will recognize the symptoms in themselves or a family member and because of you receive an earlier diagnosis and treatment. Well done!
    Is it OK if I pin these to one of my Pinterest pages?

    1. That is exactly what I'm hoping will occur. We waited many years before we had a diagnosis. Absolutely you can pin it. In fact I'd appreciate your helping to get the information out there.