Updated version of the HDSA JHD handbook published with funding from the
American Legion Child Welfare Foundation [who has been so supportive to the HDSA and our JHD kids in the US! The above
link is to the 2007 Edition handbook only If you order the hardcopy from HDSA, it comes with a JHD Handbook CD ROM that includes
all of the information contained in the Appendices of the handbook, including the JHD & The School Experience and other
HDSA HD information.! You can order the hardcopy from the HDSA. Contact Anita Marks-Paul at 1-800-345-4372 Ext.
214 or send her an email at: amarkpau@hdsa.org
The below information is on the First Edition, published in 2001 |
The Juvenile Huntington's Disease Handbook
A Guide for Physicians, Neurologists and Other Professionals
Written
and Edited by:
Martha Nance, M.D.
With additional
editing by:
Randi Jones, Ph.D.
Suzanne Imbriglio, P.T.
Betsy Gettig, M.S. C.G.C.
Published 2001 by the Huntington's Disease Society of America with funding from the American Legion Child Welfare
Foundation.
Printing: |
PDF
67 page guide was published May 2001
The Juvenile Huntington's Disease
Handbook: A
Guide for Physicians, Neurologists and Other Professionals in MSWord97
Format. This Guide is 52 pages, therefore individual sections have been separated and included with the section listed
in the below index.
|
Another excellent HDSA brochure
published in 2001 that you might to download for educating professionals, family, friends & others:
Topics include:
What is Juvenile Huntington’s Disease
When to Consider HD
Seeing the Physician
After the
Diagnosis
Specific Medical Issues
Behavioral and Psychiatric Issues
Swallowing, Speaking and Eating
Daily Life
The Progression of Juvenile HD
Financial, Legal and Social Service Issues
Hope for the Future
Resources |
Table of Contents
Click on any topic in blue to be taken to that information.
Introduction
Seeing the Physician
Diagnostic Genetic Testing in Children
Testing Children who
Do Not Have Symptoms
The Expected Course
Assembling A Team of
Care Providers
Managing Your Own Emotions
The Rest of the Family
Chapter 3:
Specific Medical Issues
|
School
Residential School & Tutoring Options
Daily Routines
Activities/Driving/Friends
Pets/Fun
The Stages of HD
Medical Problems In
Late Stages
Professional Help In
The Home
Placement Outside the
Home
Hospice Care
Medical Consent
Supplemental Security Income
Medicaid
Other Financial
& Placement Considerations
Parents
The Other Children
Other Caregivers
Appendices
|
|
