What Is Huntington’s Disease And How Is It Defined?

The brain is often considered the center of one's personality and decisions, so damage or changes to the brain can be life-changing. Huntington's disease is a fatal, inherited disease that affects the brain and progresses over time. To understand this condition, it can be helpful to understand brain disorders, the symptoms of the condition, and how it can affect individuals throughout their lives.

What is Huntington's Disease?

Huntington's disease is a condition that causes nerve cells in the brain called neurons to break down slowly, having widespread effects on a person's life. Huntington's disease affects how you move and how your brain functions and may cause mental illness. 

Huntington's disease often develops between ages 30 and 40, but symptoms can appear later or earlier. Juvenile Huntington's disease occurs when a person develops it before age 20. This disease progresses faster and can be difficult for a young person to experience. 

The disease is named after physician George Huntington. In 1872, he observed families who experienced the symptoms of Huntington's disease and wrote about it in his journal.

Causes of Huntington's disease 

Huntington's disease is inherited. If one of your parents has Huntington's disease, there may be a chance of inheriting their genes. A mutated gene causes the disease, and having one of the genes can be enough to inherit it. A child's chances of developing Huntington's disease are often 50/50 if one parent has the condition and higher if both parents have it. 

Prior knowledge about Huntington's disease in your family can help determine if you have inherited it. Huntington's disease is rare. However, despite its rarity, the disease's symptoms can be enough for many to want to look for treatment early on.  

Symptoms of Huntington's disease

Huntington's disease affects everyone differently. You may experience different symptoms initially, which can differ in their effects or appearance. Hunting's disease affects the brain in three ways, impacting movement, cognition, and behavior. 

Movement

People with Huntington's disease may have chronic involuntary movements. These can include sudden jerks or writhing movements. Your muscles may contract or become rigid, and your eyes may twitch or move slowly.

You may also have difficulty balancing, swallowing, or speaking. Some people may have minor episodes, while others may be affected more significantly. As the disease progresses, individuals may require more support with their job, doing activities around the house, talking to others, and managing finances. 

Cognition

Below are a few examples of cognitive changes that can occur with Huntington's disease: 

• It may be challenging to focus on specific tasks. 
• You may freeze mentally or become stuck in thought. 
• You may space out.
• Your impulse control may be lacking. 
• People with Huntington's disease may have outbursts, be promiscuous, and act before thinking.
• Your self-awareness may decrease.
• Formulating new thoughts or retaining new knowledge may become more complex. 

Behavior

Huntington's disease may cause psychiatric disorders or symptoms. Depression is the most common condition to develop alongside this disease. Depression may be caused in response to diagnosis but can also be caused by a change of chemistry in the brain. Individuals experiencing depression may feel sad, be withdrawn from the world, have fatigue, or experience suicidal thoughts.

Other potential mental health conditions associated with this condition include obsessive-compulsive disorder and bipolar disorder.

If you are experiencing suicidal thoughts or urges, call the 988 Suicide & Crisis Lifeline at 988 or text 988 to talk to a crisis provider over SMS. They are available 24/7 to offer support. 988 also offers an online chat for those with an internet connection.

Juvenile Huntington's disease

Huntington's disease is most common in middle adulthood but can also affect children and adolescents. Those with juvenile Huntington's disease may experience behavioral challenges, difficulty at school, and forgetfulness. They may also have muscle contractions, lose their motor skills, and experience tremors or seizures. If your child has any of these symptoms, take them to their doctor immediately.

Is Huntington's disease fatal? 

Some people with Huntington's disease may not die due to the deterioration of the condition itself but to other factors. Some people with Huntington's die by suicide. The risk of suicide spikes when a person is in the middle stages, where their independence drops. 

A person with Huntington's disease can die from infections like pneumonia, falling from a lack of balance, or other significant injuries. Their difficulty swallowing may also cause death by choking or pneumonia. Someone with Huntington's disease will eventually require support living and performing daily tasks. Later in life, those with Huntington's may struggle to speak and may be bedridden, but their ability to understand people may still be intact.

Can Huntington's disease be treated? 

There is no cure for Huntington's disease, but Huntington's Disease treatment involves managing its symptoms through the following methods. 

Medication

Medication may help individuals manage many of the symptoms of Huntington's. For example, medication for depression may be prescribed by a psychiatrist. Some medications may also help with movement difficulties and memory. Some promising breakthroughs may slow the disease more, but a cure for Huntington's disease is still being studied, and one has not yet been found. 

Physical therapy

Physical therapy may help those who are losing movement and motor skills. Regular physical therapy sessions keep your balance in check, help support your swallowing, and prevent abnormal movements. As the disease progresses, therapy can be more difficult. However, having therapy consistently can slow down the physical symptoms of Huntington's and potentially prolong one's life. Talk to your doctor to understand your prognosis in further detail. 

Huntington's disease and parenting

If you or someone you know has a history of Huntington's disease and wants to start a family, you may wonder if it would be healthy to do so. Passing on a disease like Huntington's to your child could be scary or challenging for parents. Some people with Huntington's may consider adoption or genetic testing for family planning options. 

Genetic counseling is another option. A genetics counselor can talk to clients with Huntington's about the potential risk of passing on Huntington's disease to their child. Some parents may not want to spread Huntington's and instead choose to adopt, experience in-vitro fertilization, or use other alternative methods of having children.

If a parent wants a genetic child but doesn't want the risk of Huntington's disease, they might try a preimplantation genetic diagnosis. In this method, sperm and an egg create an embryo in a lab. As the embryos grow, they are tested for the Huntington gene. The embryo can be implanted into the mother's uterus if it does not have the gene.

Preimplantation is an expensive and complicated way of preventing Huntington's disease, but some parents decide to use it. This method raises ethical concerns for some due to choosing the child's genetics before birth and potential ableism. 

Additional support options 

Huntington's disease can have significant impacts on an individual's life. It may also hurt those who have loved ones who change over time. While there is no cure for the condition, education can be one way to combat fear. 

If you are living with a Huntington's diagnosis or care for someone who is, you may be experiencing a range of emotions, including anxiety and depression about the future. However, it might be challenging to find support in a way that is convenient for you. 

For those with this condition, online therapy through a platform like BetterHelp may be more convenient. With online therapy, you can attend sessions anywhere you have an internet connection, whether in your bedroom, a hospital room, or the office. You can contact your therapist anytime and receive a response when they are available.  

Studies have also backed up the effectiveness of online therapy. One study showed that people participating in online treatment saw significant and clinically meaningful improvements in depression and anxiety after 12 weeks sustained for six months.