Know the Facts: Huntington’s Disease

Huntington’s Disease is a hereditary brain disorder that affects people of every race, all over the world. In the United States, Huntington’s Disease occurs in about one in 10,000 people, and currently, about 30,000 people in the U.S. have Huntington’s Disease. Up to 200,000 people in the U.S. are at risk of developing Huntington’s Disease in their lifetime.

What is Huntington’s Disease?

Huntington’s Disease is a neurodegenerative disease that causes the progressive death of nerve cells in the brain. Typically, symptoms start to occur in mid-life (between the ages of 30 and 50), and those symptoms progress for 10-25 years. There are exceptions, however. Huntington’s Disease can also affect young children, adolescents, and the elderly.

What are the symptoms of Huntington’s Disease?

Huntington’s Disease is complex, and it affects the body, mind, and emotions. Some symptoms of Huntington’s Disease are easy to see, but some symptoms are less visible. Symptoms of Huntington’s Disease can affect movement, cognition, and mental state. Some of those symptoms include: 

  • Involuntary jerking or writhing movements (chorea)
  • Involuntary, sustained contracture of muscles (dystonia)
  • Slow, uncoordinated fine movements
  • Slow or abnormal eye movements
  • Impaired gait, posture, and balance
  • Difficulty planning, organizing, and prioritizing tasks
  • Difficulty learning new information
  • Slowness in processing thoughts or finding words
  • Social withdrawal
  • Changes in appetite
  • Insomnia or excessive sleeping

How do you get Huntington’s Disease?

Huntington’s Disease is a genetic disease. Everyone is born with the Huntington’s Disease gene, but the disease itself is caused by an abnormal copy of the gene that is passed from parent to child. Huntington’s Disease is not contagious. Only a person who is born with the abnormal gene can get Huntington’s Disease or pass it to his/her child.

Every child that is born to an affected parent has a 50% chance of being born with the gene that causes Huntington’s Disease. Gender does not play into whether or not an individual inherits the abnormal gene for Huntington’s Disease. Those who do not inherit the abnormal Huntington’s Disease gene will not get the disease, and they cannot pass it on to their children.

How do you get screened for Huntington’s Disease?

Even though the abnormal Huntington’s Disease gene is present from birth, a clinical diagnosis of Huntington’s Disease indicates symptoms have started. Screening for Huntington’s Disease is accomplished by a comprehensive neurological evaluation that can be performed by a specialist in Huntington’s Disease or neurological movement disorders specialist. A genetic test can be used to confirm or rule out Huntington’s Disease.

What happens after a Huntington’s Disease diagnosis?

Symptoms and the progression of Huntington’s Disease can vary from person to person. Usually, though, the progression of Huntington’s Disease can be broken down into three stages.

Early Stage Huntington’s Disease

This usually includes subtle changes in coordination, difficulty thinking through problems, and often, a depressed or irritable mood. Early Stage Huntington’s Disease can make a person less able to work and function in regular environments.

Middle Stage Huntington’s Disease

During the Middle Stage of Huntington’s Disease, movement symptoms can become problematic. Medication for chorea can help relieve involuntary movements. Occupational and physical therapists can help maintain control of voluntary movements. Issues with speech and difficulty swallowing might require help from a speech pathologist.

Late Stage Huntington’s Disease

During the Late Stage of Huntington’s Disease, the individual is totally dependent on others for care. Choking and infection become major concerns during the Late Stage of Huntington’s Disease.

Joss Medical ID Cuff | Huntington's Disease

Those living with Huntington’s Disease should wear a medical ID. In the event the individual with Huntington’s Disease is unable to speak for him/herself, a medical ID can alert first responders to the fact s/he has Huntington’s Disease. Those who give care to someone with Huntington’s Disease should also wear a medical ID to advocate for the individual with Huntington’s Disease in the event of an emergency.

Medical ID Cuff | Huntington's Disease

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