Huntington’s disease is a rare disorder that affects the systems in the brain responsible for movement, emotion, and cognitive function. Debilitating symptoms of this inherited condition get worse as the disease progresses.
While there is not yet a cure for Huntington’s disease, specialized therapies offer families more control over symptoms and a higher quality of life.
MedStar Health is recognized as a Center of Excellence by the Huntington’s Disease Society of America and a member of the Huntington Study Group, a global network of scientists seeking ways to treat symptoms and cure the disease. We unite a team of specialists to craft personalized therapies for every patient, and social workers embedded within the team serve as the first point of contact and continued communication with our center.
Three key facts about Huntington's disease:
- It is an inherited disease caused by a flaw in a gene known as HTT.
- Early signs can emerge around age 35-40.
- Age of onset is variable and can occur after age 65.
Symptoms of Huntington's disease
This condition is also called Huntington’s syndrome because it covers a group of related symptoms. People with Huntington’s have difficulty walking, talking, and controlling movements. Patients have difficulty learning new information and may have depression or anxiety.
Chorea: Uncontrolled muscle movement
Derived from the Greek word for dancing, chorea describes the characteristic involuntary movements of the disease. Chorea involves a range of behaviors from fidgeting to uncontrollable limb movements. As coordination deteriorates, chorea affects posture, gait, speech, and swallowing.
The onset of chorea is when Huntington’s begins to significantly interfere with daily life—with chorea, patients can no longer work, drive, or do many daily activities safely.
Behavioral & psychiatric issues
Huntington's impairs emotional control and judgment. More than 40% of patients develop major depression and may appear increasingly apathetic, irritable, impulsive, or obsessive. Extreme behaviors can deeply disrupt personal and professional relationships.
Diagnosis and genetic counseling
People with Huntington’s have an abnormal copy of the HTT gene. All patients at our center are seen by a genetic counselor and a social worker. Your doctor will use a small blood sample to determine whether you have this genetic variance. You’ll also get a full neurological exam.
Genetic testing and a review of your family's medical history will show how the disease is passed down. Every child of a parent with Huntington’s has a 50% chance of inheriting the abnormal gene. A genetic counselor will guide you through the impacts and outcomes of an HD diagnosis. You can request an informational session at any time.
Along with genetic testing, the specialist may recommend CT, MRI, or PET scan imaging of the brain to reveal areas affected by the disease.
Treatments for Huntington’s disease
Huntington’s symptoms can appear at different times in the disease process and may seem unrelated. Your specialist team will listen closely to your changing symptoms and create a personalized, flexible care plan.
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Movement disorders
Therapies to treat movement disorders include:
- Medications to treat chorea, including tetrabenazine (Xenazine), deutetrabenazine (AUSTEDO), and valbenazine (INGREZZA).
- Physical therapy to strengthen muscles and foster better mobility
- Occupational therapy to adapt completion of daily tasks
- Speech therapy to improve communication and swallowing
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Mood disorders
Therapies to treat mood disorders include:
- Antidepressants
- Mood stabilizers
- Antipsychotic medications to manage agitation, outbursts, or psychosis
- Anti-anxiety medications
- Therapy
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Cognitive disorders
Cognitive conditions may arise in Huntington’s disease years before patients notice movement challenges. As Huntington’s progresses, patients will need memory care and additional safety measures, such as fall prevention, help with finances and legal matters, and limiting risks such as wandering.
Our providers
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Neurology
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Safia Said Abdillahi, ACNP-BC, DNP
Neurology
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Fahd Saeed Amjad, MD
Neurology
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Laxman Bhagwan Bahroo, DO
Neurology
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Anvi M Gadani, MD
Neurology
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Shreya Uday Gandhy, DO
Neurology
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Mark Mu-Quan Lin, MD
Neurology
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Steven Eechien Lo, MD
Neurology
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Fernando Luis Pagan, MD
Movement Disorders Neurology & Neurology
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Sepideh Panahi, MD
Neurology
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Sanskruti Patel, MBBS
Neurology
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Pranusha Pinna, DO
Neurology
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Yasar A. Torres Yaghi, MD
Neurology
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Barbara Marie Wilmarth, CRNP
Neurology
Clinical trials and reseach
MedStar Health patients may have access to clinical trials, which offer the latest Huntington’s disease therapies before they are widely available elsewhere.