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Spring 2003 Table of Contents
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Syndromes Associated with Progressive or Degenerative Vision or Hearing Loss

By Kate Moss, Education Specialist, Texas Deafblind Outreach

We should never assume that any child's vision or hearing is stable since there are many reasons additional vision or hearing loss may occur. There may be the onset of additional eye conditions through injury or disease. Just because someone has cortical visual impairment, doesn't mean that they are immune to vision loss related to juvenile diabetes or Usher Syndrome. A person with a conductive hearing loss may acquire additional sensorineural hearing loss as a result of exposure to ototoxic drugs or an injury to the head. Some conditions such as Congenital Rubella Syndrome have high risk for late onset of cataracts and glaucoma. This is why regular and periodic screening of vision and hearing are mandated throughout the child's time in public school. However, when a child has been diagnosed with certain syndromes or conditions, we know that there is a greater possibility (or in some cases a certainty) that there will be additional loss of vision and hearing at some point.

There are a number of syndromes associated with deafblindness that have either progressive or degenerative problems with hearing and/or vision. It is important for both parents and professionals to be aware of the possible changes in vision and hearing for children with these syndromes so we can make sure we are always making appropriate accommodations and modifications necessary for the child in the educational setting.

Below is a list of some syndromes that have either a progressive or degenerative vision or hearing loss.

If your child has been diagnosed with any of these syndromes or conditions, talk to your doctor about the possibility of a progression or degeneration of vision or hearing. Make sure you understand what changes may occur and how often vision or hearing needs to be checked to make sure changes have not occurred.

As parents, if you notice new problems with the way your child is using his vision or hearing, you may want to request new assessments through your ARD committee. When your child or student has been identified with one of these conditions, the need for both medical and educational assessment or reassessment should be considered annually. This may mean that a child needs to go to the ophthalmologist or otologist more frequently. There may be a need to update the Functional Vision Evaluation and Learning Media Assessment or the Communication Assessment each year.

Vision and hearing are critical to accessing information in an educational setting. We must make every effort to make sure we know about any changes in the status of the child's vision and hearing so we can provide the support he or she will need to succeed in school.

Resources and References

Boystown Research Hospital Website http://www.boystownhospital.org

Family Village website http://www.familyvillage.wisc.edu

Foundation Fighting Blindness website http://www.jwen.com/rp/wffb/ffb1.html

The Kniest Syndrome Info Center http://www.angelfire.com/va/btfarrell/articals.html

Lawrence-Moon-Bardet-Biedl Syndrome Home Page http://www.isgrd.umds.ac.uk/laurence/

OMIM™Online Mendelian Inheritance in Man http://www3.ncbi.nlm.nih.gov/Omim/

Pediatric Database website http://www.icondata.com/health/pedbase/index.htm/

Texas School for the Blind & Visually Impaired website http://www.tsbvi.edu/


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Last Revision: July 22, 2004