Explore Behavioral & Mental HealthHuntingtons Disease
Understanding Huntington’s Disease
For a compassionate, thorough approach to Huntington’s Disease (HD) diagnosis and treatment, come to UConn Health. Our Huntington’s Disease Program helps HD patients and their families feel a unique sense of connection and support as they cope with this lifelong, hereditary disease.
The UConn Health Huntington’s Disease Program provides collaborative care for our patients with both psychiatry and neurology specialists. We provide multidisciplinary, individualized care for patients based on their specific needs. We are the only HD clinic in the state that provides full-time dedicated care for HD patients and families.
At present, there is no cure for HD. However, many medications can treat symptoms. We provide a multidisciplinary team approach unique to each patient, and we also have pre-symptomatic testing available for at-risk adults. Families come to us for evidence-based medicine that focuses on improving quality of life through proactive management of this disease.
Huntington’s Disease is an inherited disease that affects about 30,000 people in the United States. It typically runs in families. If an individual has a parent with HD, they have a 50% chance of inheriting the disorder. HD causes the nerve cells in the brain to die, resulting in difficulty with memory, mood, and muscle movement.
Huntington’s Disease Symptoms
Symptoms of HD may appear at any age but typically develop between ages 30 and 50. The hallmark indicator of HD is uncontrolled movement of the limbs, head, and upper body, known as chorea. Additional symptoms can include:
- Changes in mood, including feelings of irritability or sadness
- Declines in thinking and reasoning abilities
- Difficulty learning and retaining new information
- Difficulty with speech or swallowing
- Insomnia and fatigue
- Lack of concentration and focus
- Mild clumsiness, impaired gait, and difficulty maintaining balance
- Slowness in processing thoughts
- Social withdrawal
Genetic Testing & Diagnosis
HD is a genetic condition; testing is available to confirm a diagnosis. We offer free genetic counseling and anonymous HD gene testing to Connecticut residents 18 and older. Our gene testing program follows the Huntington’s Disease Society of America (HDSA) guidelines and is free, which means it is not billed to insurance. This confidentiality protects your health information and keeps your results anonymous. If you have a family history of HD or suspect you may be developing symptoms, contact us to schedule your free assessment.
Evaluation & Treatment
We review patient records before your initial visit, and the team determines which provider is best aligned with your needs. We understand you and your family's unique medical and emotional needs and factor them into the final care plan. As a result, we might make treatment recommendations and connect you with services like individual or family counseling, physical or occupational therapy, psychiatric or neurological treatments, and home-based or long-term care.
Huntington’s Disease Program Services
- Genetic counseling and testing
- Education of caregivers and families in effective behavioral interventions
- Monthly virtual caregivers’ support group
- Neurological assessment and treatment of HD symptoms
- Neuropsychological (cognitive) assessments
- Psychiatric assessments and ongoing care
- Routine follow-up care
- Collaboration with home care agencies and long-term care facilities
- Onsite visits to Fresh River Healthcare for specialized ongoing care of HD patients
- Assistance with entitlements and disability determination
HD Support & Resources
Huntington’s Disease Research
Learn More About Enroll-HD ResearchUConn Health is a Huntington Study Group Credentialed Research Site and participates in Enroll-HD, a worldwide Huntington's Disease (HD) observational, multi-center study that collects data from families facing HD to improve our understanding and treatment of the disease.
Huntington’s Disease Resources
We are known for building lasting relationships with families facing HD and offer support services and resources to help them proactively manage and cope with the disease.
- Caregiver Support Group
- Our support group meets every month virtually to provide support to caregivers. Contact Robin Zingales-Browne, DNP, APRN, to join the mailing list.
- Huntington’s Disease Society of America
- The Huntington’s Disease Society of America is a national organization providing support, education, resources, and advocacy for every individual and family affected by HD.
- Huntington’s Study Group (HSG)
- HSG is a research organization that conducts clinical studies to find HD treatments that improve the quality of lives and outcomes of HD patients and families.
https://huntingtonstudygroup.org/ - General questions?
- Call 860-679-6775, and we will connect you with the care you need.