New genetic technologies have made recent expanded diagnosis of titin related muscle and heart disorders possible. We are at the tip of the iceburg as far as these discoveries. That makes our families and researchers pioneers in the age of discovery in regards to titinopathies. Please check out this 3 minute video:
Managing breathing is one of the most important factors to maintain overall health and longevity for people with muscle weakness. Because titinopathies cause such a wide variety of health issues in different people, it is good for most people to get a regular evaluation of respiratory (breathing) health. This is a link to a great … Read more
The year my son got the flu he missed 63 days of school. He was exhausted for months afterwards. It was a very difficult time for our family and not one we’d like to go through again. The flu can make you miss work, school or even be hospitalized. People with muscle disease are at … Read more