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Tay-Sachs, Canavan and related diseases

Infantile & Juvenile Support

Tay-Sachs, Sandhoff, GM-1 and Canavan diseases have common symptoms and approaches for managing day-to-day life.

Learn about the many ways to manage symptoms, making a positive impact on the quality of day-to-day life. The materials in this section describe 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.

Making Memories

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.

Preparing for the Unthinkable

Planning for the end stages of the disease.

 

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