Navigating the World of Rare Disorders
Knowing the cause of your child’s neurodevelopmental diagnosis can be a relief; but a new genetic diagnosis can also be stressful, scary, and overwhelming. It is normal to have a wide range of emotions about a new diagnosis. It is important to remember that there is no right or wrong way to cope and we all adjust to information differently.
The following are suggestions to help you begin to adjust to your child’s diagnosis:
- Acceptance. Focus on your child’s overall well-being, not just on their genetic condition. Your child has a unique personality, strengths, and characteristics.
- Education. Understanding the genetics of your child’s condition can be a challenge. It’s important to work with your medical team to develop a clear understanding of the new diagnosis; this will help you develop a clear course of action.
- Coping. Every parent has their own style of dealing with stress and caring for their child. It may be helpful to share your feelings with a family member, close friend, or mental health provider.
- Support. In addition to family and friends, online or in-person support groups can help you overcome feelings of isolation and allow you to connect to others caring for a child with a similar condition.
Social Media in the Rare Disease Community
Connecting to Research
Staying Alert to Information