18th ANNUAL EARLY HEARING DETECTION & INTERVENTION MEETING
March 3-5, 2019 • Chicago, IL

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4/16/2013  |   1:45 PM - 2:45 PM   |  Seeing the Possibilities: Usher Syndrome as the cause of my children's hearing loss   |  Solana C   |  5

Seeing the Possibilities: Usher Syndrome as the cause of my children's hearing loss

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?'

  • 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.
  • Identify genetic screening tests currently available to determine cause of hearing loss.
  • Explain to parents the resources available for families whose children have been diagnosed with Usher's Syndrome.

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Presenters/Authors

Andrea Amestoy (POC,Primary Presenter), Idaho Hands and Voices, andrea_corn@yahoo.com;
Andrea Amestoy, R.N., has been a pediatric and neonatal intensive care unit nurse and teaches classes at St. Luke’s. She has worked for the past 12 years at Idaho Sound Beginnings as a parent outreach consultant in which she markets and promotes Idaho Sound Beginnings, gives presentations and contacts parents for follow up. In addtion, Andrea works for Idaho Educational Services for the Deaf and Blind with children 0-3 who are blind or visually impaired. She earned her Health Science and Nursing Degrees from Boise State University and is a certified teacher of the blind and visually impaired with a Master's in Special Education from Texas Tech University. She recently completed her orientation and mobility certificate from Texas Tech University in August of 2019. She is the mother of three kids, two of whom have Usher's Syndrome.


ASHA DISCLOSURE:

Financial -
No relevant financial relationship exist.

Nonfinancial -
No relevant nonfinancial relationship exist.