Huntingtons Disease Society of America


The Huntington's Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with Huntington’s disease and their families.
 
HDSA's network of chapters, affiliates, HDSA Centers of Excellence, social workers and support groups provides a seamless connection for help, education and outreach to HD families and health care professionals across the United States.
 

Our Mission: 

To improve the lives of everyone affected by Huntington's disease.
 

Our Vision:

A world free of Huntington's disease.
 

CONTACT US

800-345-HDSA
212-242-1968 (National Office)
hdsainfo@hdsa.org
505 Eighth Avenue / Suite 902
New York, NY 10018
 
 

What Is Huntington’s Disease?

 
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
 
Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
 
Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25 year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications. Everyone has the gene that causes HD, but only those that inherit the expansion of the gene will develop HD and perhaps pass it on to each of their children. Every person who inherits the expanded HD gene will eventually develop the disease. Over time, HD affects the individual’s ability to reason, walk and speak.
 

Symptoms Include:

  • Personality changes, mood swings & depression
  • Forgetfulness & impaired judgment
  • Unsteady gait & involuntary movements (chorea)
  • Slurred speech, difficulty in swallowing & significant weight loss

Stages of HD

 
Although symptoms of HD vary from person to person, even within the same family, the progression of the disease can be roughly divided into three stages.
 
Early stage HD usually includes subtle changes in coordination, perhaps some involuntary movements (chorea), difficulty thinking through problems and often a depressed or irritable mood. Medications are often effective in treating depression or other emotional problems. The effects of the disease may make the person less able to work at their customary level and less functional in their regular activities at home.
 
In the middle stage, the movement disorder may become more of a problem. Medication for chorea may be considered to provide relief from involuntary movements. Occupational and physical therapists may be needed to help maintain control of voluntary movements and to deal with changes in thinking and reasoning abilities. Diminished speech and difficulty swallowing may require help from a speech language pathologist. Ordinary activities will become harder to do.
 
In the late stage, the person with HD is totally dependent on others for their care. Choking becomes a major concern. Chorea may be severe or it may cease. At this stage, the person with HD can no longer walk and will be unable to speak. However, he or she is generally still able to comprehend language and retains an awareness of family and friends. When a person with HD dies, it is typically from complications of the disease, such as choking or infection and not from the disease itself.
 
In all stages of HD, weight loss can be an important complication that can correspond with worsening symptoms and should be countered by adjusting the diet and maintaining appetite.

Centers of Excellence

The HDSA Centers of Excellence provide an elite multidisciplinary approach to Huntington’s disease care and research. HDSA currently has 39 Centers of Excellence across the United States.
 
At these world-class facilities, patients benefit from expert neurologists, psychiatrists, therapists, counselors and other professionals who have deep experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.

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.