What is Huntington's Disease?

Huntington's Disease is an inherited disorder, resulting in the slow and irreversible loss of both mental and physical capacity. The usual age of onset is between 30 and 50, usually after a person has established a career, married, and begun a family. Initial symptoms can be hard to detect and identify, and include depression, mood swings, forgetfulness, and lack of coordination.

The disease is relentlessly progressive, often taking between 10 and 25 years to fully manifest. Most late stage HD patients are totally dependent upon a care giver, usually a family member;  they cannot walk, speak or swallow. HD patients usually die from pneumonia, heart failure or other complications.  Juvenile Huntington's Disease (JHD) occurs when a person is diagnosed with HD before the age of 20.  It affects children as young as two years of age. JHD is more severe and progresses much faster.

There are 30,000 persons in the United States currently diagnosed with HD and each of their siblings and children has a 50 percent chance of developing it. Anyone can carry the gene and develop HD, regardless of age, race ethnicity, gender, geographic location or socio-economic status. HD is a "family disease," not just because it is inherited from a parent, but also because it profoundly affects the entire family unit emotionally, socially, and financially. Because of this, there are over 790,000 persons in the U.S. impacted by the disease.  In Illinois, there are 1500 patients diagnosed with HD and 7500 more at risk for HD  HD, like Alzheimer's, Parkinson's, and Lou Gehrig's Disease takes a person away from their loved ones and the rest of the world long before it kills them - and death is the only true relief from the disease.  Currently there is no treatment or cure for HD, although many of the symptoms can be treated effectively. 

The Huntington's Disease Society of America/Illinois Chapter is a non-profit organization committed to finding a cure for Huntington's Disease while providing education and services to those affected by the disease and their families.