What is the Outlook for People Living With Huntington’s Disease?

Posted on November 11th, 2022.

There’s no cure for Huntington’s disease, and doctors don’t yet have medications to stop it from progressing. But treatments can help manage some symptoms.

Huntington’s disease is an inherited condition that causes the progressive breakdown (degeneration) of the brain’s nerve cells. It’s a progressively worsening movement disorder that causes dementia and psychiatric symptoms. It belongs to the group of neurodegenerative disorders.

Huntington’s disease is rare. It mainly affects people with European ancestry. It’s estimated to occur in 3 to 7 per 100,000 people with European roots.

There’s no cure for Huntington’s disease. Doctors also don’t yet have medications to reverse the disease or stop it from progressing. Treatment mainly focuses on providing relief for some of its symptoms.

Read on to learn more about Huntington’s disease and its outlook, treatment, and latest research updates.

Living with Huntington’s disease

Huntington’s disease is a terminal illness. This means that if you or a loved one has Huntington’s, they will most likely die from this condition or its complications.

Some people have cognitive function at the time of diagnosis and understand what the diagnosis means, while others will have lost the ability to understand the condition by the time of diagnosis.

Additionally, since Huntington’s is hereditary, some people may know they will develop the condition before the onset of symptoms because of genetic testing.

But this doesn’t mean you should give up after receiving the diagnosis. There are ways to cope with and manage the symptoms of this disease.

Symptoms

Huntington’s disease causes many symptoms. Symptoms are different in the early and advanced stages of the disease.

Early symptoms of Huntington’s include:

• anxiety
• mood changes and irritability
• depression
• unusual clumsiness
• balance issues
• feeling restless
• memory issues, including unusual forgetfulness
• difficulty understanding new information
• trouble making decisions

Over time, symptoms may include:

• involuntary twitching or jerking movements (chorea)
• muscle rigidity
• difficulty moving around
• slurred speech and difficulty speaking
• trouble swallowing
• personality changes
• breathing issues
• cognitive decline
• hallucinations
• paranoia

Coping with the symptoms

Symptoms of Huntington’s disease can be extremely challenging because they impair the ability to do a lot of day-to-day tasks and activities. Let’s discuss how you can get help with these symptoms:

Help with getting dressed and moving around

An occupational therapist can help you find new ways to do activities that are hard for you to do on your own.

They can also recommend adaptive devices to help you move around the house, including:

• getting voice-activated devices for lights, TVs, computers, and other equipment
• using button hooks and zipper pulls to help you get dressed
• using electric can openers and electric toothbrushes
• installing grab rails next to your bed, by the stairs, in the bathroom, etc.
• installing a stair lift
• installing ramps to make your home wheelchair accessible

Help with eating and communication

A speech therapist can help you with speaking difficulties, such as finding alternative ways to communicate, like by using simple gestures.

A dietitian can recommend ways to cope with eating difficulties. For example, they can help with:

• getting enough calories in your diet to prevent weight loss
• figuring out ways to make it easier for you to chew and swallow food
• Help with movement and balance problems

A physical therapist can help you stay active. They can help create an exercise plan and move and stretch your joints.

Help with mental and emotional health

A psychotherapist can help you work through any emotional and mental issues associated with your diagnosis. They can also help you and your loved ones develop coping skills.

What is the life expectancy for people with Huntington’s disease?

On average, people with Huntington’s disease live 15 to 20 years after their symptoms appear. According to a 2018 Norwegian study, people with Huntington’s die roughly 13 yearsTrusted Source earlier than people without the condition.

Causes of death among people with Huntington’s include:

• infections, such as pneumonia
• injuries from falling
• complications from being unable to swallow
• Suicide is also common among people with Huntington’s.

What happens after a Huntington’s disease diagnosis?

After you receive a diagnosis of Huntington’s disease, your doctor will explain the condition, discuss your individual outlook, and answer your questions. They will also:

• talk with you about treatments that can help with your symptoms
• tell you about clinical trials you can participate in
• refer you to other medical professionals who can help you navigate your condition.
• tell you about support groups for yourself and for caregivers as well as other resources
• perform a genetic test to determine the chance of passing Huntington’s disease to your children; your doctor might also recommend close family members take a genetic test

Can Huntington’s disease be treated?

Although there’s no cure for Huntington’s disease, your doctor can prescribe medications that help relieve the symptoms. These medications include:

• tetrabenazine to treat involuntary movements
• antipsychotic drugs to manage psychiatric symptoms and certain physical symptoms
• diazepam to help with muscle rigidity and involuntary muscle contractions
• antidepressants and mood-stabilizing drugs to manage depression and other mental health symptoms

What is the most recent research on Huntington’s?

Research is currently underway to understand Huntington’s disease and find treatments. Several avenues of researchTrusted Source are being explored, such as:

• understanding the mechanisms of Huntington’s disease
• discovering biomarkers that can help diagnose this condition earlier
• finding new imaging tools to better see how this disease affects the brain over time
• testing new drugs using stem cells
• “turning off” genes associated with Huntington’s

Several treatments for Huntington’s disease are in late-stage clinical trials and might be approved within the next few years. Visit the Huntington’s Disease Society of America’s blog to read about the latest in research.

Takeaway

Huntington’s disease is a genetic condition that causes progressive degeneration of the nerve cells. There’s currently no cure for this condition or any way to stop its progression. But medications can relieve some of its symptoms.

Symptoms of Huntington’s disease are extremely challenging since they impair the ability to function. Your doctor will help you find resources to help manage your condition.

Research into the new treatments for Huntington’s disease is underway, giving hope to people living with this condition and their caregivers.

Source: Healthline.