Ectodermal dysplasias do not only affect body parts. They can cause lots of emotions for everyone in the family. How can I cope with the diagnosis? Why do I feel like I do? Is this my fault? Will I be able to get a job? What is my child’s life going to be like? How will this affect my relationships? What can I expect for my life, or for my child’s life? Such emotional stress can be an extra burden, but it can also be a source for emotional growth.
Parents can help their children to maximize their adjustment by:
- Providing a supportive emotional environment.
- Encouraging the special skills that they possess.
- Helping them to lead essentially normal lives.
Our goal is to support you so that you and your family can thrive!
- Coping With Diagnosis – Learn tips for how to work through the emotions that come with a new diagnosis.
- Meet Our Families – In addition to our staff, other NFED families are a powerful source of support for you. Their stories and experiences will help you realize you are not alone.
- Supporting Your Child – Learn ways to support your child at every age and how to talk about ectodermal dysplasia.
- What to Expect – Not knowing what the future will bring may make you uneasy. Learn what to expect and some tools for navigating the future.
- Sharing a Diagnosis – Learn tips for how and when to share a new diagnosis at different life stages.
We want you to know that there are thousands of affected individuals with a wonderful quality of life. We have their voices and stories to prove it! Please connect with our NFED community.