Living With HD Overview

Whether it is a person who has inherited the fatal gene that causes Huntington’s disease, a family member or a caregiver, HD impacts more than 1,000,000 Americans. In this section you will find resources that will enable you to improve the quality of life for your loved one and your family.

Huntington's disease is a disease that affects entire families, not just the person with HD. This is particularly true of the person(s) who become caregivers. You become responsible for helping your loved one face the basic responsibilities that he or she previously handled by themselves.

Caring for a person with Huntington's disease is a monumental task. You will work with a variety of professionals: doctors, nurses, social workers, rehabilitation therapists, psychologists and other specialists. The better your understanding of how HD progresses and how it affects a person with HD's mood, thinking and movement, the better you can help your loved one.

If you have questions, or need further information, please contact our National Helpline at 800-345-HDSA. For a complete listing of HDSA resources CLICK HERE.