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.
- 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.
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.