Title: 'Seeing the Possibilities: Usher Syndrome as the cause of my children's hearing loss'
Track: 5 - Medical Home
Keyword(s): genetics, diagnosis, hearing loss, medical professionals, syndromes
Learning Objectives:
  1. Discuss with parents the pros and cons of genetic testing when a hearing loss is identified and explain the results of the genetic tests to parents in a sensitive, empathetic, educational and professional manner.
  2. Identify genetic screening tests currently available to determine cause of hearing loss.
  3. Explain to parents the resources available for families whose children have been diagnosed with Usher's Syndrome.


Author: Andrea Amestoy, R.N. Affiliations: Idaho Sound Beginnings Presenter: Andrea Amestoy, R.N. Over 2/3 of hearing loss is inherited and can be caused by mutations in numerous different genes. As a parent of three children, two with hearing loss, the etiology of my children's hearing loss haunted me. Speaking with other parents of newly diagnosed children, this question resonates loudly with them as well. Health professionals involved in diagnosis, primary care and early intervention programs can be invaluable in explaining the value of genetic testing to parents and encouraging them to pursue further testing. To emphasize the positive impact that genetic testing can have on a family, a personal story will be shared. The relentless pursuit of unraveling the mystery of my children's hearing loss, what the diagnosis meant and how I learned of my children's syndrome will be covered. In addition, ways to share potentially painful and shocking genetic results with families in a sensitive and caring way will be discussed. The information covered in this presentation will be vital for professionals working with children with hearing loss and their parents who have asked in some form or capacity, 'Why does my child have a hearing loss and what caused it?'
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Handouts: Handout is not Available
Andrea Amestoy - POC,Primary Presenter
Idaho Sound Beginnings
     Credentials: Registered Nurse, Idaho Sound Beginnings Parent Outreach Consultant
      Andrea has worked as a pediatric and NICU registered nurse and currently teaches birth and parenting classes. In addition, she has worked for the school district as a teacher/registered nurse in the Health Professions Program. She graduated cum Laude in 2000 with a BS in Health Science and an AS in nursing. Andrea has been the parent outreach consultant for Idaho Sound Beginnings for the past 7 years. She began soon after her second child was diagnosed with hearing loss at 4 weeks of age. She assists the program with the development of educational materials, offering the dual perspectives of a parent and a medical professional. Andrea is the parent of 3 children, 2 diagnosed with Usher Syndrome Type IIc. She is currently working on her Master's in Special Education with a teaching certificate to become a TVI (teacher of the visually impaired) through Texas Tech University.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.