Huntington Disease: 10 Important Things to Know

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It’s never easy to begin the challenging journey of a new health condition. When we or someone we know is diagnosed with a disease, there are a lot of anxieties and unknowns thrown in. What’s going to happen to me or them? What does this mean for the future? How can I treat this illness? 

Knowledge is power when it comes to a scary illness like Huntington Disease. The more we understand the disease itself and its symptoms, as well as diagnoses and treatment options, we can approach this difficult time with a clear head. 

Let’s define what Huntington’s Disease is, and talk about 10 important things to know about this neurodegenerative genetic disorder.

What is Huntington’s Disease? 

Huntington’s Disease (HD) is a brain disease caused by a mutation of a small gene called huntingtin. This DNA error inflicts damage on the brain over time. This neurodegeneration causes deterioration of a person’s emotional, physical, and mental abilities. 

Over the course of 10 to 30 years as terminal symptoms worsen, the individual will experience:

  • Dramatic mood swings
  • Forgetfulness and impaired judgment 
  • Unsteady gait and involuntary movements
  • Slurred speech and difficulty swallowing 
  • Significant weight loss 

Because Huntington’s Disease is genetic, it is passed down from generation to generation. The average age that symptoms manifest is from 35 to 44, but can present earlier or later in life. There is currently no cure for this condition. Read on for 10 important things to know about Huntington’s Disease. 

  1. There are 3 stages of HD: early, middle, and late stage.

The three stages of HD progress over the span of 10 to 30 years after initial diagnosis. During early stage HD, individuals are still mostly functional, and can continue to work, take care of themselves, and drive. 

Middle stage HD, individuals can no longer drive, manage their own finances, or do household chores. They may still be able to eat and dress themselves normally. 

Late stage HD requires full-time care, and assistance with all aspects of daily living. Individuals are often nonverbal, rigid, and will eventually succumb to heart failure, pneumonia, or other complications. 

  1. There is a high risk of passing HD down to children. 

Huntington’s Disease is a condition triggered by a genetic mutation, which is passed down from a parent with the disease to their offspring. The child of a parent with HD has a 50/50 chance of inheriting it. 

  1. Early signs of HD include difficulty concentrating, clumsiness, and mood swings.

It can be difficult to identify the early signs of Huntington’s Disease, as these can be mistaken for numerous other issues. Some early symptoms of HD include: 

  • Difficulty concentrating 
  • Depressed moods
  • Clumsiness and stumbling
  • Memory lapses
  • Mood swings, aggressive behavior
  1. Most people develop the disease in their 30s and 40s.

One of the painful things about this disease is it usually comes on during a person’s peak work and family-raising years. Individuals usually see first symptoms in their 30s and 40s, but it can also come on in adolescence or later years. 

  1. HD primarily affects the striatum area of the brain. 

Huntington’s Disease affects the whole brain. But the striatum, which is an area deep within the core of the brain, is the most affected part. The striatum controls movement, behavioral control, and mood. 

  1. There is currently no cure, but there are treatments to manage symptoms.

As of now, there are no known cures or treatments to slow or stop the progression of HD symptoms. But there are treatments and interventions to help manage symptoms. 

Medications for depression or for calming involuntary movements can be prescribed. Occupational and physical therapists can assist in developing strength and safer movements. 

And nutritionists and speech pathologists can help improve eating, swallowing, and speech impairments.

  1. You can take a blood test to find out if you have or will develop HD. 

Huntington’s Disease can be diagnosed or detected with a blood test that shows the presence of the huntingtin gene mutation. Many individuals who have a parent with HD decide to pre-screen for this disease. 

The process of testing is long and thorough, and involves initial counseling to decide if the individual is fully prepared for the psychological impact of being diagnosed with this terminal disease.

  1. People with advanced HD require full-time care.

In the later stages of HD, a person will lose the ability to work, drive, and do basic home tasks. It will also grow difficult to swallow and speak, and movements will become stiff and slow. A full-time caregiver will eventually be necessary to help the individual with eating, dressing, and other basic tasks. 

Are you struggling with an HD diagnosis? Seek out Huntington’s Disease resources at BetterHelp to assist you during this challenging time.

  1. HD is similar to symptoms of ALS, Parkinson’s, and Alzheimer’s combined.

Huntington’s Disease is neurodegenerative, and as such, it affects a person’s motor skills, mobility, behaviors, and memory. All these symptoms combined can present in a similar way to that of ALS, Parkinson’s, and Alzheimer’s.

  1.  Juveniles can also develop HD, though it is less common.

Juvenile Onset Huntington’s Disease (JOHD) is a form of Huntington’s Disease that affects children and teens. While many of the symptoms of JOHD are similar to adult-onset HD, instances of seizures and rigidity are more common. 

In addition, while adults with HD live 10 to 30 years after diagnosis, JOHD progresses faster and juveniles tend to live up to 10 years after diagnosis. 


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