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Huntington’s Disease

Osterhout Berger Daley > Disabling Conditions > Huntington’s Disease

Huntington’s disease is relatively rare, but people who have the condition can reach a point when they’re no longer able to work. This disease affects people in different ways, and it can progress at different rates, but there are some symptoms that are very serious, including problems with movement, cognition, and psychiatric health. Anyone who has been diagnosed with Huntington’s disease should be aware of the benefits that people who are diagnosed with the condition can receive and how they can apply for those benefits.

What Is Huntington’s Disease?

Huntington’s Disease is a condition that affects the nerve cells in the brain. It’s a degenerative condition in which the brain’s nerve cells progressively break down over time, creating cognitive, psychiatric, and movement problems.

Most people with Huntington’s disease originally begin to develop it in their 30s, 40s, or 50s, and anyone who develops the condition before the age of 20 is said to have juvenile Huntington’s disease, which can progress more quickly than it does for people who develop the disease later in life. The symptoms of the disease will also be different for those who develop it earlier in life.

Huntington’s disease is heritable and is linked to a single gene, which means that it only needs to be passed on from one parent in order for a person to get the disease. People who develop Huntington’s disease in adulthood usually have a life expectancy of about 10 to 30 years after onset, but people diagnosed with juvenile Huntington’s disease usually have a life expectancy of about 10 years from the time of onset.

As the disease progresses, people are often confined to a bed, and suicide often occurs before a person is diagnosed and in the middle stages of the disease as the patient begins to lose independence. In the later stages, there are a few reasons why many people die, including pneumonia and other infections, injuries from falls, and complications that are related to the person’s difficulty or inability to swallow.

Because Huntington’s disease is heritable and the progression of the disease cannot be changed, the only way to prevent Huntington’s disease is to pre-select the egg and sperm before the baby is conceived and use invitro fertilisation to ensure that the child born doesn’t have Huntington’s disease.

Symptoms of Huntington’s Disease

There is a wide variety of symptoms that can present themselves, but the order in which these symptoms occur will vary from one person to the next. There’s also a great variety of categories that each of the symptoms falls under, including movement disorder, cognitive disorders, and psychiatric disorders. Children who are diagnosed with Huntington’s disease will also present with a slightly different array of symptoms.

The movement disorders that adults with Huntington’s disease are likely to show include things like involuntary jerking and writhing motions, muscle contracture, abnormal or slow eye movements, and impaired posture, balance, and gait. Some people will also exhibit difficulties with speech or swallowing.

Cognitive impairments that are associated with Huntington’s disease include things like difficulties with organizing, prioritizing, and staying on task. Some people might also experience difficulties with being flexible in their thinking patterns, such as getting stuck on a single thought or behavior. Other people will have difficulties controlling impulses, which can lead to sexual promiscuity. There are also people who have difficulties processing new information, difficulties with finding the right words, or difficulties with being aware of their own behaviors.

Psychiatric disorders are also common, and these can include things like insomnia, social withdrawal, apathy, irritability, or sadness. Some people will also experience fatigue and have thoughts of death or suicide. Mania, bipolar disorder, and obsessive-compulsive disorder are also common for people with Huntington’s disease.

Treatment for Huntington’s Disease

While there isn’t a treatment for Huntington’s disease that can alter the course that the disease will take, there are some things that a person can do to manage the symptoms. For instance, there are several types of medications that doctors prescribe, but the exact mix of medications will likely change over the course of the time that the patient has the disease. For movement disorders, some of the commonly prescribed drugs include tetrabenazine and deutetrabenazine. Antipsychotic drugs are often used, but they can have some side effects, including restlessness, drowsiness, and involuntary motor movements. Antipsychotics and mood-stabilizing drugs are often prescribed for psychiatric conditions like depression and manic episodes.

In addition to receiving medications, many people with Huntington’s disease will also receive psychotherapy to help the patient develop coping strategies, help with behavioral problems, and manage expectations about what is going to happen as the disease progresses. A psychologist or other mental health professional can also help facilitate communication between family members and the patient.

Speech therapy, occupational therapy, and physical therapy are other types of treatment that many patients with Huntington’s disease will need. Because Huntington’s disease can impair speaking and swallowing, many people need a speech therapist to learn how to eat more easily and use communicative devices. Physical therapy helps patients learn how to use exercises to improve strength and flexibility so that the patient can continue to move freely for as long as possible. Finally, occupational therapy might be incorporated to help the person learn how to set up the home with wheelchair access and other assistances to create a more habitable environment.

Disability Benefits for Huntington’s Disease

Huntington’s disease is a condition that will eventually make it impossible for people to work, and the Social Security Administration can provide disability benefits to those who qualify. Adult onset Huntington’s disease is now eligible for the Compassionate Allowance program, which was put in place to help people with severe and chronic conditions avoid lengthy application processes. Instead of taking several months or even more than a year to be approved for disability benefits, applicants with Huntington’s disease can be approved in as little as a few weeks.

There are many conditions that have been added to the Compassionate Allowance list, which was started by the SSA back in 2008 as a way of expediting the process for people who have a condition that clearly renders them completely disabled. Huntington’s disease is one of those conditions that was recently added without about 30 others.

When applying for benefits, there are certain pieces of information that applicants will need to include. For instance, the doctor’s diagnosis as well as the basis for the diagnosis will be important. Brain imaging results, genetic testing, and neurological testing are some of the test results that will likely need to be included in the application. Some other information might include psychological or psychiatric test results, any doctor’s records that show that the degeneration is consistent with Huntington’s disease, and lab test that show more than 40 CAG repeats in a particular gene.

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