5 Must-Know Huntington’s Disease Facts
This post gives you the facts you need to make important decisions as a Huntington’s disease patient or a caregiver.
Huntington’s disease is a rare brain disorder where cells in particular areas of the brain slowly become damaged and die. It affects movement, thinking, behavior, and eventually a person’s ability to carry out everyday activities. The disease usually begins in adulthood, but juvenile Huntington’s disease can begin during childhood or adolescence.
People have a lot of wrong assumptions about Huntington’s disease because some of its symptoms can look similar to other neurological and psychiatric conditions.
This is a form of neurodegenerative disease that can affect not only older and middle-aged people but also younger people. Juvenile Huntington’s disease is generally defined as symptoms beginning before age 20, although the condition is rare.
Two famous musicians—Woody Guthrie and French actress and singer Sophie Daumier—lost their lives after living with Huntington’s disease. Woody Guthrie was diagnosed with Huntington’s chorea in 1952 and died in 1967.
Let’s Have a Look At 5 Huntington’s Disease Facts
1) More Than $20 Million Has Been Committed To Huntington’s Disease Research
The Huntington’s Disease Society of America (HDSA) is a nonprofit organization working for people with Huntington’s disease through research, education, advocacy, and support services.
HDSA has committed more than $20 million to research since 1999, with the goal of finding effective treatments that can slow Huntington’s disease.
This is an important update from the older figure of $18 million that I originally mentioned in this article.
Research into Huntington’s disease is happening in many areas, including treatments that aim to reduce or modify the effects of the mutated HTT gene and huntingtin protein. Researchers are also studying ways to identify disease changes earlier and improve treatment of the symptoms that already affect patients.
HDSA also provides support through its Centers of Excellence and other programs for people and families living with Huntington’s disease.
This is one of the interesting Huntington’s disease facts that can open up new channels of information for you.
2) A Child Has A 50% Chance Of Inheriting Huntington’s Disease From A Parent Who Has It
What are chromosomes?
Every single cell in our body has some instructions saved in it. These instructions are known as genes. These genes are arranged along long strands called chromosomes.
A human being normally has 46 chromosomes, arranged into 23 pairs. You inherit one copy of each chromosome from your mother and another copy from your father.
Huntington’s disease is caused by a disease-causing expansion in the HTT gene.
Unlike some genetic disorders, Huntington’s disease is inherited in an autosomal dominant pattern. This means that a person generally needs only one disease-causing copy of the HTT gene to be at risk of developing Huntington’s disease.
How Is Huntington’s Disease Inherited?
If one parent has a disease-causing HTT expansion, each child has a 50% chance of inheriting that expanded gene copy.
This does not mean that every child will definitely develop Huntington’s disease immediately.
The age at which symptoms begin can vary considerably. It also depends on the number of CAG repeats in the HTT gene and other genetic factors. A person who inherits a full-penetrance expansion is expected to develop Huntington’s disease during their lifetime, although the age of onset can vary.
This is why genetic counseling is so important for families affected by Huntington’s disease.
A person who is considering predictive genetic testing should not feel that they have to make the decision alone. Genetic counselors can explain the possible results and help a person understand how testing may affect relationships, family planning, employment, insurance, and emotional well-being.
3) Good Nutrition Is An Important Part Of Huntington’s Disease Care
Unfortunately, good nutrition does not get rid of Huntington’s disease completely.
However, nutrition is an important part of caring for a person with Huntington’s disease because many patients lose weight and may need more calories than an average person. The reasons can include involuntary movements, changes in metabolism, swallowing problems, and the increased physical effort required for everyday activities.
Research and clinical guidelines recommend paying close attention to nutrition throughout the disease.
The goal is not simply to follow a standard weight-loss diet. In fact, people with Huntington’s disease are often encouraged to maintain a healthy body weight, and in some cases a body weight slightly above the usual “desirable” range may be helpful.
Huntington’s disease patients in the early stages may have few problems swallowing food.
But as the disease progresses, swallowing can become more difficult. This can increase the risk of choking, dehydration, and malnutrition.
This is where a caregiver’s role becomes important.
A dietitian, speech-language therapist, occupational therapist, and other members of the medical team may help determine the safest food textures, eating strategies, and nutritional plan for the patient.
4) Huntington’s Disease Can Alter Sexual Behavior
Understanding the sexual behavior and needs of a person suffering from a brain disorder can be one of the most challenging things for families and medical professionals to deal with.
The patient’s family may find it uncomfortable to discuss this topic with each other or with doctors and may try to avoid bringing it up.
This is one of the more mind-opening Huntington’s disease facts we have covered in this post.
Sexual changes can occur in Huntington’s disease. Some people experience reduced sexual desire, while others may develop increased sexual interest or sexually disinhibited behavior.
A 2020 systematic review found that sexual problems are common in Huntington’s disease. The review reported both reduced and increased sexual interest among people with HD, although the available research has limitations and the exact rates vary between studies.
These changes should not automatically be interpreted as the person simply becoming “bad” or immoral.
Huntington’s disease can affect areas of the brain involved in judgment, impulse control, behavior, and emotional regulation. The current medical understanding of HD recognizes psychiatric and behavioral symptoms as an important part of the disease.
Some people may therefore show behavior that is completely out of character for them.
This can include inappropriate sexual comments, excessive sexual interest, disinhibition, or other behavior that creates problems within the family or community. More serious behaviors require immediate discussion with the patient’s doctor or HD care team because the safety of the patient and other people has to come first.
The important thing for caregivers is not to feel embarrassed about raising this subject.
Doctors need to know about significant changes in sexual behavior because there may be ways to manage the underlying symptoms and reduce the risk of harm.
5) Juvenile Huntington’s Disease Does Not Automatically Mean A Nursing Home
This is one part of the original article that I would change.
A person who develops Huntington’s disease at a young age does not automatically have to spend the rest of their life in a nursing home.
Juvenile Huntington’s disease is rare and is generally defined as Huntington’s disease beginning before age 20. It can look different from adult-onset HD, with symptoms such as behavioral changes, declining school performance, stiffness, balance problems, seizures, and other movement or cognitive problems.
Some people with juvenile HD may eventually need extensive daily care, but the timing and level of support are different for every person.
The type of care needed depends on the person’s symptoms, progression, family situation, safety needs, and ability to manage everyday activities.
Physical therapy can also play an important role.
Current physical therapy recommendations for Huntington’s disease support aerobic exercise and resistance training to improve fitness and motor function, as well as supervised gait training. Therapists can also teach caregivers safer ways to help with movement and transfers.
As the disease progresses, some people may eventually need residential care or 24-hour assistance.
However, this should not be treated as an unavoidable immediate outcome for every young person with Huntington’s disease.
The goal is to provide the right level of support at the right time while allowing the person to remain as independent as safely possible.
Conclusion
These are some of the most important Huntington’s disease facts I have noticed while researching this condition.
Huntington’s disease is complicated because it does not affect only one part of a person’s life. It can affect movement, thinking, mood, relationships, nutrition, sexuality, work, and eventually independence.
That is why caregivers need to look at the whole person instead of focusing only on the physical symptoms.
If you are caring for someone with Huntington’s disease, I would also recommend learning about nutrition, swallowing problems, physical therapy, genetic counseling, and behavioral changes. Understanding what is happening can make some of the difficult situations a little easier to handle.
You may also be interested in reading about the Best Treatment Options for Huntington’s Disease.
What other Huntington’s disease facts have caught your attention? I’d love to hear about them in the comments!
