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Learn about the many ways to manage symptoms, making a positive impact on the quality of day-to-day life.

Tay-Sachs, Sandhoff, GM-1 and Canavan Diseases

Tay-Sachs, Sandhoff, GM-1 and Canavan diseases have common symptoms and approaches for managing day-to-day life. Read through the materials in this section to learn about various symptom management techniques, where to find help, and how to cope. 


Newly Diagnosed

Advice for getting organized, finding the right doctor, and learning about
resources available to you.

What to Expect

Understand how symptoms change over time.
The more you know, the more comfort you can provide.

Symptom Management

Read about feeding and nutrition, seizures, respiritory health,
and sensory stimulation

Special Equipment

Practical advise on using strollers, wheelchairs and
other equipment.

Services

There are specialists out there. Learn how others may
help your family and how to make the most of their services.

Palliative & Hospice Care

The focus of these organizations is on life and living, with the goal
to improve the quality of life for the child and the family.

Happy Times

Tips and ideas for day-to-day activities, including meals,
support for siblings, and respite care for family members.

Coping

And through it all, you need to take care of yourself
and your child's siblings.

Ways to Help

When you want to help, but are not
quite sure how or what to give.

Grief

Suggested readings on understanding grief, healing,
and remembering.

Late Stages

Planning for the end stages of the disease

Infantile & Juvenile Support

  • Infantile & Juvenile Support
    • Newly Diagnosed
      • First Steps
      • Philosophy of Care
      • Free Info Packet
      • Register for Research
      • Become a Member
    • What to Expect
      • Infantile
      • Juvenile
      • Canavan
    • Symptom Management
    • Special Equipment
      • Respiratory
      • Positioning
      • Other
    • Services
      • In Home Services
      • Early Intervention & Beyond
      • Getting Outside Help
    • Palliative & Hospice Care
      • Palliative
      • Hospice
      • About Insurance
    • Making Memories
    • Coping
      • Taking Care of YOU
      • Siblings
    • Ways to Help
      • Gift Ideas
    • Grief
    • Preparing for the Unthinkable
  • Late Onset Support
  • Meet the Families

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Infantile & Juvenile
Tay-Sachs, Canavan, Sandhoff, GM-1

Newly Diagnosed
What to Expect
Symptom Management
Special Equipment
Services
Palliative & Hospice Care
Making Memories
Coping
Ways to Help
Grief
Preparing for the Unthinkable

Late Onset
Tay-Sachs, Sandhoff, GM-1

Newly Diagnosed
Communication Skills
Swallowing Difficulties
Employment
Housing
Mental Health
Mobility

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