ABOUT HUNTINGTON'S DISEASE

“Life has got a habit of not standing hitched. You got to ride it like you find it. You got to change with it. If a day goes by that don't change some of your old notions for new ones, that is just about like trying to milk a dead cow.”

-Woody Guthrie, American musician, well known for his song “This Land is Your Land” 1912-1967, died of Huntington's Disease at 55.

WHAT

Huntington’s Disease (HD), also called Huntington’s chorea, is a rare, inherited brain disorder that results in loss of physical control and mental capacity. HD is characterized by progressive physical, cognitive, and psychological deterioration. HD affects both women and men and all ethnic groups.

WHEN

Symptoms typically appear between the ages of 30 and 50, but may appear earlier or later. People from two to 80+ years of age can develop HD. If the condition develops before age 20, it's called juvenile Huntington's disease. When Huntington's develops early, symptoms are somewhat different and the disease may progress faster.

IS IT GENETIC

YesHuntington's disease is caused by an inherited defect in a single gene. Huntington's disease is an autosomal dominant disorder, which means that a person needs only one copy of the defective gene to develop the disorder. This results in a 50% chance of the gene being passed on.

However, this also means that if the gene is not passed on, it cannot appear in future generations either.

In simpler terms: Remember the big R, little r square from biology class? With the exception of genes on the sex chromosomes, a person inherits two copies of every gene — one copy from each parent. A parent with a defective gene could pass along the defective copy of the gene or the healthy copy. Each child in the family, therefore, has a 50% chance of inheriting the gene that causes the genetic disorder.

IS THERE A CURE

No, at this time there is no cure or treatment to slow or stop the progression.

Families should proceed with caution when using new medications, however, as some individuals with HD may be more sensitive to side effects than others. It is important to document side effects of new medications or changes in behavior after a medication has been added to your loved one’s routine.

Medications are available to help manage the symptoms of Huntington's disease. But treatments can't prevent the physical, mental and behavioral decline associated with the condition.

SELF-CARE OPTIONS

While there is not a specific treatment to slow or stop the progression, similar to other forms of dementia, symptom management in various forms (ex: physical therapy, medication, speech therapy, occupational therapy) is the present goal of treatment while research is underway.

External Resources

Note: Links/URLs are great when they work, a huge annoyance when they don’t.  They may update faster than we can catch them.  To help keep up, in addition to the link, we’ve included the description of the location of the information to assist with good old fashioned web searching.

For disease overview and information:

The Family Caregiver Alliance, has a "navigator" for finding support across the US. https://www.caregiver.org/family-care-navigator

Research and clinical trial information: https://Clinicaltrials.gov

DID YOU KNOW… THREE FAST FACTS

Huntington’s Disease...

  • Is caused by a defective HTT gene. If your immediate parents do not have HD, it cannot be passed on.
  • Huntington’s disease is considered a "young dementia" with onset typically between the age of 30-50.
  • Support is essential. HD can impact mental and physical health.
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