Titin Myopathy

All about Titin Protein, Titin Myopathy, Titinopathy, Titinopathies

Titin Myopathy - All about Titin Protein, Titin Myopathy, Titinopathy, Titinopathies

Where to get good cardiac care?

Variants in the Titin gene are known to cause some heart problems in some people.  If you are wondering where to get a good heart evaluation and treatment here is a great resource available for you.

The Children’s Cardiomyopathy Foundation has recognized medical centers with expertise in pediatric cardiomyopathy. A designated CCF-accredited center of care provides high-quality cardiac care and specialized disease management to children with cardiomyopathy.

Click below for more information as well as a list of centers:

Children’s Cardiomyopathy Foundation’s Accredited Center of Care Program 

 

Respiratory Management

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 video made by Dr. Reghan Foley from the National Institutes of Health.  In this video she covers a lot of critical information!  Please watch: Proactive Respiratory Care in Congenital Muscle Disease.