Huntington's Disease Facts And Statistics

Huntington's disease (HD), generally involves the breakdown of nerve cells in the brain—and it can be overwhelming for both individuals living with the disease and their loved ones.

If you or someone you know is living with Huntington’s disease, learning more about it can be helpful as you navigate this diagnosis and prepare for what may come. Read on for several key facts and statistics about Huntington’s disease, including its roots, prevalence and effects.

Key facts about Huntington’s disease

It is generally designated as an inherited disease

The mutation that can cause HD is generally attributed to the HTT gene, which can provide cellular “instructions” for making huntingtin, which is considered by many to be a protein found in many of the body’s tissues and with high activity in the brain. 

It can be rare 

Huntington's disease can be considered statistically rare, with an estimated prevalence in North America of 5.7 per 100,000 people. 

HD can affect anyone, regardless of gender, race or socioeconomic status. However, it can be more commonly seen in those of European descent. Juvenile cases of Huntington's disease can occur in about 5-10% of all diagnosed cases, making it generally uncommon to see compared to other conditions.

Symptoms can appear in a person’s thirties or forties

Symptoms of Huntington’s disease can start to appear at a variety of ages, generally progressing when people are in their thirties or forties. However, if the condition occurs before the age of 20, it can be called juvenile Huntington's disease.

It was named after George Huntington

Many have found that Huntington’s disease gets its name from George Huntington, an American doctor who is designated by many as the first to diagnose the condition. 

In 1872, Huntington first described the condition after observing how it might have affected different families, noting that some families were experiencing a hereditary condition characterized by psychiatric symptoms and chorea (involuntary, unpredictable movements).

It generally affects three major functions 

Huntington's disease can significantly affect movement, cognitive, and psychiatric functions. We’ve listed examples of this below: 

• Movement: Huntington’s disease can affect movement, which may include trouble balancing, swallowing and having trouble while speaking. A person may experience involuntary jerking, writhing or twitching. Additionally, because of balance and movement difficulties, a person with HD may experience falls that cause serious injury or even death. 
• Cognitive: Huntington's disease can worsen a person’s cognitive functions over time. They may have difficulty focusing on tasks or tend to get stuck on a thought. They may also have poorer impulse control, which can lead to regrettable or even dangerous decisions. A person living with HD may also have difficulty retaining information or lack awareness regarding their own behaviors and abilities. 
• Psychiatric: Huntington's disease can also be associated with psychiatric symptoms and disorders. One of the most common can be depression, which may occur due to changes in brain function that happen with HD—rather than just as a result of trying to cope with the diagnosis. Other symptoms may include irritability, insomnia, fatigue, and social withdrawal, and other common conditions include obsessive-compulsive disorder (OCD) and bipolar disorder. Some people may also experience suicidal thoughts. 

If you or a loved one is experiencing suicidal thoughts, reach out for help immediately. The 988 Suicide & Crisis Lifeline can be reached at 988 and is available 24/7.

It can advance over time

As Huntington's disease generally involves the gradual breakdown of nerve cells in the brain, the symptoms can get worse over time. At first, one may be able to cope with symptoms and carry on independently, but as the disease progresses, they may require more and more help with daily tasks. 

The average lifespan after receiving a diagnosis of HD is about 10 to 30 years. However, this can be estimated on an individual basis, and supportive strategies can help people to have a higher quality of life. 

Some people may consider preimplantation genetic diagnosis 

Huntington's disease is considered by many to be genetic, and some people who have it may unknowingly pass it on to their children. This can happen because symptoms may not show up until middle age, when many people have already had their children. With this risk in mind, some people with HD may consider adoption or other routes to have a child. 

Some people may also consider preimplantation genetic diagnosis if they want to have a child without the disease. This process generally involves scientists using the parents' eggs and sperm to grow embryos. These embryos might then be monitored for the gene that is thought to cause Huntington's disease. 

If the gene is not present, the embryo can then be implanted into the uterus. This may be an expensive process, and some people may not be comfortable with this concept. However, it is considered by many to be an available method of assisted conception for those who want to consider it.

There is no formal or singular cure at the time of this publication, but various treatments may help

At the time of this publication, there is no singular, recognized way for a person to reverse or stop Huntington's disease from progressing—but there are various treatments available that may help a person manage symptoms and adapt to changes brought on by the disease. 

For instance, medications can be used to help control movement and treat psychiatric symptoms, and psychotherapy may be used to help with behavioral concerns and learn coping strategies. Physical therapy and occupational therapy can also be helpful for navigating mobility and functional ability concerns. 

How online therapy can help

For individuals living with Huntington’s disease (and their loved ones), talk therapy can be a valuable part of treatment and of navigating the changes this disease can bring. 

However, for some, mobility challenges or caregiver responsibilities can make it difficult to leave the house and travel to an in-person therapy appointment. In these cases, online therapy may be a convenient alternative, as it can allow you to connect with a licensed therapist from the comfort of your own home. 

The current research on psychological interventions for people living with HD is considered by many to be fairly limited, but research has found information that suggests the effectiveness of online therapy for a range of other concerns—including medical illnesses with psychiatric symptoms. 

For instance, a recent research study conducted an overview of the effectiveness of internet-based cognitive behavioral therapy (ICBT), and it concluded that “ICBT is useful in treating mental health and medical illnesses with psychiatric comorbidities”. 

This finding alone can be impactful for those who are considering online therapy as a method of support for a diagnosis of HD, whether it’s for themselves or in regards to a loved one who was recently diagnosed.