What Is The Treatment For Huntington’s Disease?

Medically reviewed by Nikki Ciletti, M.Ed, LPC
Updated February 21, 2024by BetterHelp Editorial Team

Huntington's disease is a genetic condition that results in movement problems, physical changes, changes in mental status, and other symptoms due to the gradual loss of nerve cells. Over time, those with this genetic disorder lose control of their cognition, affecting movement, the ability to think clearly, and their ability to live independently. If you have the mutated gene that causes the disease, it’s possible (though not certain) that you’ll develop Huntington’s disease at some point in your life. Presently, there is yet to be a cure or a way to reverse it. However, there are ways to treat this serious disease. In this post, we'll dive into those treatment options and discuss which ones may be most effective.

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What is Huntington's disease?

Huntington's disease involves the gradual breakdown of the nerve cells in your brain, which can surface in middle age for most people, though it can appear at a younger age, too (known as juvenile Huntington’s disease). The disease can cause issues with movement, cognition, and mental health. Huntington's disease is named after the physician George Huntington, who first observed and described the disease in 1872.

What causes it?

Huntington's disease is an autosomal dominant disorder and is entirely genetic.

If your parent has it, then there is a 50 percent chance that the Huntington gene will be passed to you.

If you have family with Huntington's disease or a family medical history of developing Huntington’s, it's worth getting tested for it. A doctor can use genetic testing to tell you if you don’t have the disease, if you’re susceptible to developing it, or if you will develop the disease.

This disease is caused by a mutation in your HTT gene. This gene is known for making huntingtin, an essential protein that is still not fully understood. It is believed to help nerve cells stay healthy, and in some cases, prevent them from self-destructing. 

Huntington's disease treatment

There is yet to be a way to reverse the effects of Huntington's disease or halt its progression. However, there are Huntington’s disease treatment options for the symptoms of the disease. The hope is that these treatments can help those with Huntington's live a fuller life and slow down its progression so that the person can live independently for longer. Treatment involves tackling the many Huntington’s disease symptoms that come along with Huntington's disease, starting with movement issues.

Movement and muscle problems are perhaps the most prevalent problems with Huntington's disease. Trouble walking can lead to falls, which can injure or even potentially kill the person with Huntington's disease. Involuntary movements, known as chorea, can cost someone their job or ability to live a full life. Sometimes, Huntington's disease can affect the speech muscles, making it difficult to talk. People may choose among different medication options to improve their movements and motor symptoms. Medications can come with a host of side effects, so it’s important to talk with your doctor before deciding which drugs are right for you. 

Treatment for comorbid psychiatric problems

Those with Huntington’s disease may comorbidly experience psychiatric diseases. A few of the more common psychiatric conditions include:

  • Depression. This can develop not only because they're experiencing a disease that is known to get worse as time goes on, but because Huntington's disease can affect the brain and its chemical levels.
  • Obsessive-compulsive disorder. OCD involves feeling unsatisfied after completing a task, and you may obsessively complete the task over and over in hopes that you feel satisfied. Huntington's disease can lead to OCD due to how it degenerates the brain.
  • Mania. This is when you feel extremely happy and have high self-esteem to the point of delusion.
  • Bipolar disorder. This is when you are sometimes experiencing mania and sometimes experiencing depression. Having or developing bipolar disorder comorbidly with Huntington's disease is possible.

Other psychiatric symptoms include mood changes, violent outbursts, difficulty organizing thoughts, and more. Each of these psychiatric symptoms can be treated in therapy, with prescription medication approved by the Food and Drug Administration, or using a combination of both of these. 

Physical therapy

Physical therapy is another way to treat failing muscles and early symptoms. Working out your body can reduce and slow the effects of Huntington's disease, and an experienced physical therapist can help. They may be able to teach you how to use your muscles and maintain your balance in the wake of Huntington's disease.

Speech therapy

As mentioned earlier, your speech muscles can be affected by Huntington’s, not only impacting your speech but swallowing as well. This makes it difficult to communicate and to eat and drink. That’s why many people with this condition consider speech therapy for Huntington’s disease. A speech therapist can help you relearn how to use your throat and mouth muscles and get your point across.

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Occupational therapy

This involves teaching the patient to use different techniques and devices that will help them to live as independently as possible for as long as is viable. You may need assistance walking, eating, dressing, or doing any other daily life task. An occupational therapist may recommend a specific wheelchair or simple things like a jar opener to help you along. They can also curate specific routines to help minimize memory loss, and recommend different methods of getting dressed, doing dishes, and doing other daily tasks as the disease progresses.

Psychotherapy

This involves teaching coping strategies to those affected by Huntington's disease. For many, the idea of living with movement disorders that will cause them to lose functionality over time is a terrifying one, and those with Huntington’s disease may need some counseling to learn how to cope. The same applies to families of those with Huntington’s, who may take care of their loved one and experience different challenges associated with the disease, such as accepting that there is no cure for their loved one.

Support groups

Another form of therapy is a support group. People who have Huntington’s disease can comfort one another, and caretakers can exchange advice and offer hope with support groups like the Huntington’s Disease Society. Besides taking to Internet forums, there are support groups available in person, including through the Huntington's Disease Society. Sometimes, just being able to relate to other people can make a world of difference.

Huntington's disease and reproduction

While it’s not possible to cure Huntington's disease, there is one way you can try to prevent it, which is trying to avoid spreading it to your children. Since Huntington's disease usually emerges in middle age, many adults may have already had children and didn't realize at the time that they have and may be passing on the mutated gene to their children. 

If you know early on in your life that you have the gene and are at risk for developing Huntington’s, you may wonder what you can do if you're going to have children. Seeking genetic counseling and undergoing prenatal testing may be a solution. A genetic counselor can tell you if your children are going to be prone to Huntington's disease or not and give you more information about your options.

Some people with Huntington’s may choose to adopt instead of having kids of their own, while others may look for surrogate parents. For those who want to pass their genes on to their next child, but not the Huntington's gene, there is an emerging treatment known as a preimplantation genetic diagnosis.

In this treatment, the parents' DNA is used to create embryos. These embryos are tested for the gene that causes Huntington's disease. If the embryo does not contain the gene, it is implanted in the mother's womb. It's a controversial option that is not for everyone, but so far, it's the only known way to have children that are genetically yours without any risk of spreading the gene.

Help on the horizon?

As medicine improves, there have been promising treatments for Huntington's disease. Recently, one such pill, known as Ionis-HTTRx, has been in trial. This pill targets the mutated huntingtin proteins, which can reduce the damage to your nerve cells. Scientists also hope to use this pill to one day fight other disorders such as Alzheimer's. Make sure to follow the news about Ionis-HTTRx for more updates and ask your doctor about other drugs on the horizon.

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The road to better mental health is sometimes hard to follow

Online therapy with BetterHelp

In addition to treating any mental health symptoms that you may have, such as depression, a therapist can help you cope with any other concerns you’re experiencing. If you're in the early stages of your disease, you may wonder what you can do to accomplish all your life goals before the disease overtakes you. You can also learn how to accept your diagnosis. A therapist can give you practical tools to help you healthily cope with the disease and continue to live your life as fully as possible.

If you're a caretaker, a therapist can help you not only with your loved one but also with yourself. Being a caretaker of someone who has Huntington's disease can be difficult, and a therapist can remind you that you should treat yourself in addition to your loved one.

Online therapy can be particularly useful for those with conditions like Huntington’s disease because sessions can be held virtually without having to leave one’s home. Additionally, because you don’t need transportation to get to sessions and your therapist doesn’t need to have a physical office, online therapy tends to be overall cheaper than traditional therapy, even without health insurance. Online therapy can be effective whether you’re experiencing the condition yourself or caring for someone with it. 

The effectiveness of online therapy

Studies on the efficacy of online therapy are promising. For example, the National Center for Health Research conducted a thorough review of dozens of studies on virtual therapy. They found that online therapy is just as effective as traditional, in-person interventions at treating a variety of conditions, including depression, anxiety, PTSD, and trauma. This is promising for those with Huntington’s who may also be experiencing depression or anxiety, which is common.

Takeaway

While there is not yet a cure for Huntington's disease, by treating it properly, you can still live a productive life. Approaches can include medication, physical therapy, occupational therapy, speech therapy, and mental health therapy. All of these methods help to manage different aspects of Huntington’s disease and can help the individual to live a fuller and more independent life for as long as possible. Online therapy can help people with Huntington’s disease work through their emotions regarding their diagnosis and help them cope with mental illnesses that develop comorbidly. Internet-based therapy can also be beneficial for caregivers’ mental health as they learn how to effectively be there for their loved ones.  
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