Huntington’s Disease: Symptoms of Early, Mid, and Late Stages

Huntington’s disease is a progressive condition, meaning that the symptoms get worse over time. Some people call it “Huntington’s chorea,” after the condition’s hallmark symptom. 

Chorea is an uncontrollable, rhythmic movement of the body. But the symptoms of Huntington’s disease go well beyond this noticeable sign. And they differ depending on whether someone is in the early, middle, or later stages of the disease.

What is Huntington’s disease?

Huntington’s disease is caused by a genetic mutation (change) of a protein called “huntingtin.” The mutation causes nerve cells in the brain to break down and die. This occurs in areas of the brain that are responsible for things like movement and communication.

Huntington’s disease is a “dominant” genetic disease. This means that if you inherit the genetic mutation from either parent, you develop the disease. So each child born to a parent with Huntington’s disease has a 50% chance of inheriting the disease. 

Rarely, a “sporadic” mutation may occur. This occurs when a person develops the genetic mutation that causes Huntington’s disease without inheriting it.

Usually, symptoms start when a person is between 30 to 50 years old. But, sometimes, symptoms can appear during childhood or adolescence (juvenile-onset Huntington’s disease). A person with juvenile-onset Huntington’s disease has more mutated DNA, which causes the disease to show up earlier. But this type of Huntington’s disease is rare.

Since Huntington’s disease is progressive, symptoms worsen over time. 

Early signs of Huntington’s disease

Early signs of Huntington’s disease tend to be milder and less noticeable than those in later stages of the disease.

Early symptoms of Huntington’s disease include:

• Changes in mood: People may experience a rise in depression, anxiety, anger, and/or irritability.

• Trouble concentrating: It may be harder to complete ordinary tasks like balancing a checkbook.

• Obsessive-compulsive behavior: Sometimes people will do the same task over and over.

• Difficulty planning things: Simple tasks and activities may be harder to plan — like planning dinner or booking healthcare appointments. 

• Trouble remembering things: Huntington’s disease can lead to dementia. In the early stages, this may look like occasional forgetfulness. For example, someone who normally pays their bills on time may forget to do so.

• Clumsiness: Some of the early movement symptoms can look like clumsiness. Someone may drop objects or trip while walking up stairs more often than normal. 

• Problems with balance: Similar to clumsiness, a person may notice that they don’t feel as steady when walking. This can lead to more frequent falls. 

What is typically the first symptom of Huntington’s disease? 

Changes in behavior and clumsiness are usually the first symptoms of Huntington’s disease. But the initial symptoms can vary from person to person. And they may not look the same for everyone.

Mid-stage symptoms of Huntington’s disease

As the disease advances, the symptoms will become more noticeable. Someone with mid-stage Huntington’s disease may start to experience:

• Trouble walking: A person may need a wheelchair or a walker.

• Difficulty speaking: Someone may only be able to express themselves using a few words at a time.

• Trouble swallowing: Huntington’s disease affects how well someone can control their muscles, including the muscles that help them swallow.

• Unintentional weight loss: Since swallowing becomes more challenging, most people experience weight loss.

• Memory loss: At this stage, memory loss is more severe than just misplacing the TV remote. But the person probably won’t forget recent events or memories, as is common in dementia. Rather, they’ll forget how to do certain things, like how to get dressed or brush their teeth. 

• Unusual eye movements: The eyes may move back and forth uncontrollably (horizontal nystagmus). 

• Uncontrollable muscle movements: These are quick movements or “tics.” They may include eye blinking, shoulder shrugging, or other repetitive movements.

• Uncontrollable dance-like movements: These fluid movements are known as “chorea.” They differ from tics because they tend to be larger range movements. And every movement is different from the one before it, whereas tics are repetitive.

Chorea can happen throughout the course of the disease. For some, it may even be one of the first signs. Stiffness and rigidity can also begin earlier. But for most people, it’s a later symptom. And others may not experience chorea at all. Instead, they only develop stiffness and rigidity.

Late-stage symptoms of Huntington’s disease

In the late stages of Huntington’s disease, the symptoms look like worsening of many of the symptoms above. This includes:

• Rigidity and lack of movement: This is also called “akinesis.”

• Slowness of movement: This is sometimes referred to as “bradykinesia.”

• Inability to walk: A person may be bedbound during the late stages of the disease.

• Inability to communicate: A person may not be able to communicate with words.

Can you have Huntington’s disease and not have symptoms?

Yes, you can have Huntington’s disease and not have symptoms until much later in life. Symptoms generally do not appear until a person is 30 to 50 years old. In rare cases, symptoms can develop as early as 2 years old and as late as 80 years old. Late-onset Huntington’s disease occurs when symptoms start after a person is 60 years old.

Blood tests can determine if a person has the gene that causes Huntington’s disease. If someone is at high risk of developing the disease, this test may help put their mind at ease. And it can help guide medical care as well as family planning.

In some cases, the blood test may show that you have some mutated DNA but not necessarily enough to develop symptoms. A genetic counselor and your healthcare provider can help you interpret your results and figure out if this may be the case for you.

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Written by:

Cherilyn Davis, MD

Cherilyn Davis, MD, is a board-certified pediatrician in New York City. She has held local and national roles at the American Medical Women’s Association including board member of the physician division and physician chair of social media.

Edited by:

Katie E. Golden, MD

Katie E. Golden, MD, is a board-certified emergency medicine physician and a medical editor at GoodRx.

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