Henry Ford’s Movement Disorders Center emphasizes collaborative care with a team of specialists who work together to create a personalized care plan for Huntington’s disease. Our clinic offers a compassionate, multidisciplinary approach to diagnose and care for individuals with Huntington’s, who are regularly evaluated by a:
- Social worker
- Speech pathologist
- Physical therapist
Our goal is to provide a comprehensive and ongoing care plan, education and support.
What is Huntington’s disease?
Huntington’s disease is a rare, hereditary, progressive brain disorder caused by a defective gene, which causes nerve cells in the brain to break down. While people are born with the faulty gene, for most individuals, symptoms do not appear until middle age. The most common symptoms include abnormal, irregular, dance-like movements (chorea), mood and psychiatric disorders, and dementia. These are progressive, often impacting the individual’s functional abilities over time. The average life expectancy with this condition is 15-18 years after the onset of symptoms. While there is no cure for Huntington’s disease, there are many therapies and interventions that can reduce symptoms and improve quality of life.
Approximately 30,000 people in the United States have been diagnosed with Huntington’s, although more than 200,000 are considered to be at risk for developing the disease.
The stages and treatment of Huntington’s disease
Treatment will not slow the progression of the disease, but it can help to manage some symptoms. While these can vary among individuals, specialists divide the progression of the disease into four major stages:
- Pre-symptomatic: These may include individuals who are “at-risk” for Huntington’s disease or those who have been diagnosed by genetic testing but are not experiencing any symptoms associated with the disease.
- Early stage: Symptoms are often subtle and may include involuntary movements, trouble concentrating and depression or mood swings. At this stage, physical therapy, counseling and medications may be used to help reduce and accommodate symptoms.
- Middle stage: At this stage, symptoms become more pronounced and ordinary activities become more challenging. The individual may have significant issues with movement, thinking, speech and swallowing. Treatment often includes medications in combination with occupational and physical therapists, and a speech language pathologist.
- Late stage: This stage is characterized by a complete loss of independence. The individual will require assistance with most activity and will likely be confined to a wheelchair due to dementia and impaired coordination and balance.
Who is at risk for Huntington’s disease?
Huntington’s disease runs in families, and it can affect multiple generations. Those individuals with a family history are understandably concerned about how this disease could affect them or their children:
- If a parent has Huntington’s, each child has a 50 percent chance of carrying the defective gene.
- Any child who inherits this gene will develop Huntington’s if they reach the age where symptoms begin to appear.
- However, if a child has not inherited the defective gene, they will never develop the disease and there is no risk of passing it on to their own children.
Up to 25 percent of individuals diagnosed with Huntington’s will have no known family history. As a result, anyone with chorea should be evaluated for this condition.
How do you diagnose Huntington’s?
- There may be several steps in a diagnosis, including:
- Complete medical examination
- A thorough family history
- Discussion of symptoms
- CT or MRI brain scan can be considered to assess changes in the brain and rule out other disorders
- Genetic testing is recommended to confirm the diagnosis of Huntington’s disease
An individual with the defective gene will develop Huntington’s disease. As a result, some choose to have genetic testing, so they can plan better for the future. Others prefer not to know, as this could affect their current enjoyment of life. This is a very personal choice and it is important to discuss it with medical professionals. Our team includes an experienced physician and genetic counselor, who can help guide at-risk individuals to make an informed decision.
Juvenile Huntington’s disease
In about 10 percent of cases, Huntington’s develops in children or adolescents. This form of the disease typically progresses much more rapidly and is associated with psychiatric disorders and abnormalities in movement (stiffness, slowness and poor balance). This is a very rare condition, and these individuals may have different symptoms compared to their relatives who were affected at a later age. Our team is experienced in caring for both adults and children affected by Huntington’s disease.