About HD
What is Huntington’s Disease?
Huntington’s Disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is no treatment or cure. HD slowly diminishes the affected individual’s ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25 year period. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with HD. Each of their siblings and children has a 50 percent risk of developing the disease. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.
A Disease of Families
For generations, Huntington’s Disease was regarded as a mysterious and shameful affliction. Families were stigmatized by the disease and shunned by the community. Today, HD is recognized as one of the more common diseases and is becoming one of the most researched diseases.
The fact is, Huntington’s Disease affects more people than Hemophilia and as many as Cystic Fibrosis or Muscular Dystrophy. A quarter of a million Americans in the US alone have HD or are at risk of inheriting it.
Huntington’s Disease affects males and females of all races. HD can strike at any age, though it usually appears between the ages of 30 and 50, after a person has married, had children and possibly passed on the gene. Each child of a person with HD has a fifty-fifty chance of inheriting the Huntington’s gene. Anyone who carries the gene will develop the disease.
In approximately ten percent of cases, Huntington’s Disease affects children or adolescents. The rate of decline among juveniles is generally more rapid and in most cases, children diagnosed with HD will die before reaching adulthood.
Huntington’s Disease challenges the entire family. Children may face the loss of a parent and face the prospect of inheriting the disorder themselves. Fear of passing the gene on to offspring affects people’s decisions about careers, marriage, and having children. Spouses or caregivers are faced with severe and prolonged emotional and financial strains, often depleting all of the families resources.
The High Cost of Care
The combination of emotional, cognitive and motor symptoms in Huntington’s Disease contributes to an unusually high cost of care. People with HD require care form healthcare professionals of many specialties, including general practitioners, neurologists, social workers, home health aides, psychologists, physical therapists, and speech/language pathologists. In addition, those at risk may seek genetic counseling and related healthcare services.
Hope for the Future
At HDSA, we are hopeful that Huntington’s Disease can be cured. We believe that given adequate resources and dedication, our mission to wipe out this devastating disease will be reached.
Over a decade ago, scientist were dreaming of finding the Huntington’s gene. That dream was accomplished in 1983 through the hard work of scientists, the support of families, and a multimillion-dollar investment in genetic research.
This knowledge is a giant step forward in finding a cure. With your help, we believe we can shape a future that is free of HD.
How Can You Help?
Both funds and volunteers are needed to help HDSA grow. You can offer your time and talents in return for a richly rewarding volunteer experience, or you can make a financial contribution through a range of giving vehicles.
To make a tax-deductible donation or for more information please contact The Rocky Mountain Chapter at (303) 321-5503.