Huntington's disease care team: Specialists involved in treatment
Huntington’s disease (HD) is a rare, inherited neurological condition that causes damage to brain cells. It currently has no cure, and treatment focuses on managing symptoms.
About 41,000 Americans have active HD symptoms. Because HD is hereditary, a person who has received an HD diagnosis will need to inform their family that future generations may inherit the condition.
HD is progressive and requires care from diagnosis through the end of life. A person’s HD care team will involve a range of healthcare professionals to address various symptoms.
A neurologist is a doctor who specializes in diagnosing, managing, and treating conditions that affect the nervous system and brain.
Because HD is a neurological condition, a neurologist (sometimes one specializing in movement disorders) will usually oversee a person’s care. But in some cases, a primary care doctor may lead HD care.
The most common symptom in adults with HD is chorea, which is
As the disease progresses, uncontrollable movements may occur more often and become more intense until the muscles become more rigid, slowing the movements.
Because cognitive decline occurs in every person with HD, a neurologist will also help manage symptoms related to cognition (the ability to think).
A neuropsychologist assesses the brain’s structure and function in relation to a person’s behavior and their psychological processes.
This specialist may perform a neuropsychological assessment to determine whether a person is likely to experience behavioral challenges due to a presumed or diagnosed neurological condition.
A neuropsychologist can provide a baseline assessment when a person first receives an HD diagnosis, followed by periodic assessments to monitor changes in mental function. They can also offer counseling on managing changes in mental capabilities.
Neuropsychological tests may include tests of memory, language, and motor skills. The specialist can also use prior test results to determine how much a person’s cognitive abilities have changed.
A psychiatrist may co-lead a person’s care after an HD diagnosis, providing support and monitoring mental, behavioral, and emotional needs.
This specialist can check for certain mental health conditions that may be associated with HD, such as psychosis, agitation, depression, and anxiety.
Mental health professionals can provide talk therapy to help people and their families cope with HD as it progresses.
Physical therapists can develop exercise programs to help people improve their strength, coordination, balance, and flexibility.
They can also assess a person’s gait and decide which assistive devices may support their mobility.
An occupational therapist can assess a person’s workplace, driving ability, home safety, and daily living routines. Additionally, they can help a person adjust to using any recommended assistive devices, such as:
A small
AACs can range from simple writing boards and mats with symbols and pictures to specialized software on computers and tablet devices.
HD can cause severe difficulties with speech, swallowing, and eating, and speech therapy may help reduce the impact of these symptoms.
A speech therapist can also help people communicate without speech when necessary, such as by using a board with images of everyday items and activities.
Social workers can provide information and access to local community services.
Some social workers can also provide psychosocial counseling if they are licensed to do so.
In the early stages of HD, a person may not need to work with a dietitian. But as the condition progresses, people may find it difficult to maintain adequate nutrition and hydration.
A dietitian can conduct a nutritional assessment and advise people on general healthy eating as well as any HD-specific nutritional needs. They can also recommend supplements if needed.
The dietitian can recommend foods to help ensure that a person meets their calorie needs and, if necessary, suggest changes to the texture of foods and liquids to make them easier to swallow.
A dietitian can also ensure that a person who uses a feeding tube receives the correct supplements.
A geneticist or genetic counselor can discuss a person’s
Testing can help a person make informed decisions about their future care, their finances, and whether they want to become a parent. After testing, a person will also be eligible for HD clinical trials.
There is no right or wrong answer to whether a person should test for HD. It is a very
The Huntington’s Disease Society of America (HDSA) recommends that those who wish to receive genetic testing do so at an HDSA-approved genetic testing facility.
People under 18 years of age typically do not undergo HD testing unless doctors need to confirm a diagnosis of juvenile-onset HD after an extensive neurological examination.
For people who are considering pregnancy, clinicians can offer pre-genetic diagnostic testing, which, when combined with in-vitro fertilization (IVF), can help ensure that an implanted fertilized egg does not carry the gene that causes HD.
Because HD can cause a wide variety of physical, behavioral, and cognitive symptoms, a person will typically work with a multidisciplinary team to ensure that they receive well-rounded care.
The table below summarizes some of the specialists who typically take part in HD treatment and how each one can help:
Huntington’s disease (HD) is a rare, currently incurable neurological condition that significantly changes the lives of people who have the disease and their families.
A multidisciplinary team of specialists will manage various aspects of HD care, including medical needs, mental health care, dietary changes, and genetic concerns. Organizations such as the Huntington’s Disease Society of America can offer additional support and advice.