After the Diagnosis

After parents receive the diagnosis that their child has Usher syndrome, they have a lot of questions. Should I tell my child? When should I tell my child? What should I tell my child? How should I tell my child? 

In our many conversations with parents, we know that there is no one answer. Each family must decide how they want to handle each step of this new journey based on many factors that are quite personal. On this page, we offer resources that will help families find their community, learn from their peers and adults, and answer their questions in ways that honor and respect their values and their children. 

Join the community. You are not alone. There are many ways to become part of a community of support that understands your experiences and can share theirs. The USH Blue Book connects individuals and families affected by Usher syndrome via email. This community is a tremendous resource when you have questions, as well as a great resource for tips and positive anecdotes that can provide encouragement.

Our USH Connections Conference provides a venue to meet other families and individuals with Usher syndrome face-to-face while learning about the latest research. The location of the conference changes every year to encourage people from different parts of the country, and the world, to participate.

Take care of yourself. The diagnosis may still be fresh in your mind. You may be overwhelmed by details or you may be propelled to do everything you can. You might want to start by joining a FB Group for "Usher Moms" or monthly Family 2 Family Community (F2FC) Zoom calls, where you'll meet other parents of kids with Usher syndrome. For more information about these calls, email Carly or Pam at 

Blogs and other Resources

  • Here is a simple question for you. How old were you when you learned you had Usher syndrome and would you have wanted to have known at a younger age?

  • These downloadable brochures introduce Usher syndrome to three distinct audiences: parents/family members, health care professionals and educators.

  • Shanna Dewsnup is mom to Brendan, who has Usher syndrome and a musician. Shanna is also an audiologist, and one of 2 USH Ambassadors in Arizona.

  • In this video from our USH Partner, Ava's Voice, parents of kids with Usher syndrome talk about how they felt when they received their child's diagnosis of Usher syndrome. Alongside these interviews, their children describe how they experienced the diagnosis.

  • Deciding when to tell your child that they have Usher syndrome, and how to tell your child their diagnosis, can be a daunting decision. This letter was written by a group of adult students at the Helen Keller National Center in 1994, and describes their feelings about getting the news about their diagnosis from their parents.