About HD

Huntington's Disease

"Huntington's disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent generations. A person who inherits the HD gene will sooner or later develop the disease. Whether one child inherits the gene has no bearing on whether others will or will not inherit the gene. Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have difficulty feeding himself or herself and swallowing. The rate of disease progression and the age of onset vary from person to person. A genetic test, coupled with a complete medical history and neurological and laboratory tests, helps physicians diagnose HD. Presymptomic testing is available for individuals who are at risk for carrying the HD gene. In 1 to 3 percent of individuals with HD, no family history of HD can be found."

(credit: http://www.ninds.nih.gov/disorders/huntington/huntington.htm)


Online Huntington's Disease Resources

Here are a few recommended sites that explain much about Huntington's disease including its causes, symptoms, and how it is diagnosed.
  • Hopes, Huntington's Outreach Project for Education, at Stanford. This site does a wonderful job of describing HD Basics.
  • Hospice & Palliative Care: National Hospice and Palliative Care is an organization representing hospice and Palliative care providers. The website provides education and resources.
  • At the National Institute of Neurological Disorders and Stroke take a look at their Huntington's Disease Information Page.
  • There is much to read and learn at HD Lighthouse (HDL)
  • On HD Buzz you can sign up to follow the latest HD research news through Twitter, Facebook, Email or RSS Subscription.
  • Long term care: SeniorLiving.org is a website that educates you on long term care, there is also an option to search local facilities.
  • Medicare: Medicare.gov is a website that will give your information on health and drug plans as well estimate Medicare costs and compare coverage options. https://www.medicare.gov

Personal Stories About How HD Has Affected Local Families

Jennifer's story "I Will Continue to Fight On"
Natalie's story "A Family Disease"
Delane’s shared “Out Loud” her story in our recent “Gift of Hope” appeal


For more information contact
Sherri McElfatrick
215-219-3521
socialworker@phillycurehd.org