When a Child is Diagnosed
Resources for Families
When a child is diagnosed with dystonia, parents may not know where to turn. The process of diagnosis and coping with symptoms can be overwhelming.There are resources available to help you:
- Seek out the best medical care for your child. Consider consulting a pediatric neurologist with training in movement disorders or a movement disorder neurologist who treats children.You can click here to begin locating a physician by state.
- Educate yourself about dystonia and treatment options. Download a special fact sheet about dystonia for children.
- Request educational materials from the DMRF, including a copy of Never Look Down, to help inform your child's teachers and school administrators. Consider the best way to help your child's friends and peers understand dystonia.
- Connect with other families in the dystonia community.
► Locate your nearest dystonia support group.
► Consider joining the DMRF group Support4Parents of Children with Dystonia on Facebook.
► Get acquainted with additional online resources.
► Consider attending a DMRF event.
► The DMRF can individually match you with families with similar diagnoses, in your area of the country, and/or with children similar in age.
- Consider seeking the assistance of a family therapist or counselor to strengthen communication within the family and navigate especially difficult issues.
- Consider getting your family active within the dystonia community.
- Stay informed of DMRF events, news, and activities by requesting the monthly eNewsletter and/or joining the mailing list.
- Contact the DMRF at 800-377-DYST (3978) or firstname.lastname@example.org for individual assistance accessing resources and creating your support network.Sue Baron talks about her family's experience with dystonia after her son's diagnosis, and how she partnered with other volunteers in the dystonia community to start the Rhode Island Dystonia Support Group.
To view additional videos about the work of the DMRF, visit our YouTube channel at:http://www.youtube.com/facesofdystonia
Accelerating Research & Inspiring Hope
The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.