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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Juvenile Huntington disease


Other Names for this Disease
  • Huntington disease, juvenile onset
  • JHD
  • Juvenile onset HD
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Your Question

I am a special educator working with an 18-year-old female who was recently diagnosed with Juvenile Huntington disease. We are attempting to develop an education and health safety plan and would appreciate any information you could provide.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might an individual with Juvenile Huntington disease (HD) be managed in a school setting?

As soon as a diagnosis of Juvenile HD is made, it is important for the family to contact the school and begin to develop an Individualized Education Plan (IEP) for the child, which outlines how the school will address disabilities caused by the disease that interfere with the child’s education. Because Juvenile HD has many disabling symptoms, the plan may include adjustments or variations in 1) academic instruction, 2) physical education, 3) meals, 4) seating, 5) transportation and 6) behavior control. The goal should be to provide and maintain a safe, supportive learning environment for the child. Some children benefit by staying in a class with familiar classmates. Others may need the individualized attention available in a special education program. Some children remain in school throughout their illness; others may need a residential school environment to address their physical or behavioral disabilities.[1]

The book and CD-ROM, Meeting the Challenges of JHD: Best Practices for the School Environment, which is available from Huntington Disease Society of America (HDSA), outlines proven strategies to help schools work successfully with children with Juvenile HD. The HDSA recommends that all school personnel who will work with a child who has Juvenile HD participate in a training session which utilizes this tool. To obtain a copy of this book and CD-ROM, you can call the HDSA at their toll-free number: 1-800-345-4372 or E-mail them at: hdsainfo@hdsa.org.

The HDSA also has The Juvenile HD Handbook: A Guide for Families and Caregivers – Second Edition, which has a specific section (Chapter 4, page 30) on how to manage these individuals in the school setting. Click on the link above to view this handbook.
Last updated: 6/10/2011

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