Support Groups for Myotonic Dystrophy

Support can come from family, friends, churches, psychotherapists, healthcare professionals as well as from strangers that live with the same disease and life experiences as you. The MDF is comprised of families living with myotonic dystrophy and we welcome you to our support family.

Most likely you fit into one of the following categories.

  • I am living with myotonic dystrophy
  • I am a parent caring for a child, young adult or adult living with myotonic dystrophy
  • I am a spouse caring for a husband or wife living with myotonic dystrophy
  • I am a non-affected family member of a person living with myotonic dystrophy
  • I am a grandparent and the genetic link to myotonic dystrophy in the family
  • I am a widow/widower of an individual who lived with myotonic dystrophy
  • I am a friend of a person living with myotonic dystrophy

Myotonic dystrophy is a chronic, progressive disease and to date there is no treatment or cure. We must remember that myotonic dystrophy, in many cases, does not have to be terminal.  We as individuals, family members and friends need to learn to manage the symptoms of myotonic dystrophy to maintain a quality and quantity of life. Support Groups will help you understand the physical as well as the psychological and emotional aspects of the disease. We can build alliances with other individuals in similar positions and learn from one another.  In the process of giving support to others, you will receive support in return.  As we share our experiences with others, always be mindful that the symptoms of myotonic dystrophy affect each individual differently, even those in the same family.

As most families coping with the disease know, finding a local support group has it's challenges.  There are support groups coordinated through different organizations, but they are not specifically focused on myotonic dystrophy. Because of this, over the years we have seen many home grown support groups popping up in the United States, around the world and on the world wide web.

Find a support group near you or tell us about a support group.  You may also find support on our discussion forum.