Coping and support

When you learn your child has a congenital myopathy, you may experience a range of emotions, including anger, fear, worry, sorrow and guilt. You may not know what to expect, and you may worry about your ability to care for your child. The best antidote for fear and worry is information and support.

Consider these steps to prepare yourself and to care for your child:

• Find a team of trusted professionals. You'll need to make important decisions about your child's education and treatment. Build a team of health care providers, teachers and therapists you trust. These professionals can help evaluate the resources in your area and explain state and federal programs for children with disabilities.
• Seek out other families who are dealing with the same issues. Ask your doctor if your community has a support group for parents of children with congenital myopathies. You can also find internet support groups. Family and friends also can be a source of understanding and support.