You’ve reached my Blog. Somehow you have been touched by Myotonic Dystrophy. Maybe you are a new parent with a child with the disease. Maybe you’ve just been diagnosed. Maybe you are a medical professional with this disease.
This website started in 1996 as a flat page to summarize all the information on Myotonic Dystrophy. Its gone through a lot of iterations over the years. Here you can find information that is not readily available elsewhere. Basically, I try and post everything I can on the subject. Over the years web sites have come and gone so I try and capture as much as possible.
Like most sites, warning that you need to check with your doctor about the information on this site. For up to the date medical information check out the Myotonic Dystrophy Foundation site. They have the most recent and most accurate information. Its been vetted by their Medical Advisory Board. Also on this site is a Community where you can post and ask questions of others with the disease.
See below Chris and Myself at Disney-World in August of 2011. Chris loves Mickey Mouse and we live near Disneyland in Anaheim and also visit Disney-World a couple of times per year. Chris loves it. He walks but needs Wheelchair for all day activities at the Parks.
Chris is now 28 and has been hospitalized many times due to pneumonia and heart issues. Our last major hospitalization was for 4 months in 2018.
My son Christopher Weston has the congenital form of the disease. His Mom has the early adult onset form. She died in January of 2018 at age 59 of complications of the disease. It’s a beast of a disease affecting almost every organ and slowly gets worse over time once the adult symptoms start.
Check out the different categories and use the search function. You’ll find a lot of information that you need here.