Huntington's Disease

Albany Medical Center HDSA Center of Excellence

Albany Medical Center's Huntington's Disease Clinic is a Huntington's Disease Society of America Level 2 Center of Excellence. It is one of only four such centers in New York State and 55 in the country.

As an HDSA Center of Excellence, we specialize in the diagnosis and treatment of Huntington's disease, focused on a multispecialty approach to care. Patients have access to care provided by neurologists, psychiatrists, therapists, counselors, and other specialists.

We conduct research and testing for gene mutations and participate in a national organization of investigators, the Huntington's Study Group. The Group evaluates new approaches to the treatment.

Our providers and location can be found in the Get Care section of this page.

 

A preliminary diagnosis of Huntington's disease is based primarily on answers to questions, a general physical exam, a review of family medical history, and neurological and psychiatric examinations. If symptoms strongly suggest Huntington's disease, we may recommend genetic testing. This test can confirm the diagnosis. It may also be valuable if there's no known family history of Huntington's disease.

The genetic mutation responsible for Huntington's disease is located on the fourth chromosome. It is possible to make a definitive diagnosis of Huntington’s disease using genetic testing. It is also possible to test for the presence of the abnormal gene in family members who are at risk for inheriting Huntington’s disease.

For more information on testing and counseling, contact Julie Lundberg, Division of Genetics, at 518-262-5027.

Medical Genetics & Genomics at Albany Medical Center

There is currently no cure or treatment which can halt, slow or reverse the progression of the disease. However, there are many treatments and interventions that can help to manage symptoms. A neurologist, psychiatrist, or nurse with expertise in Huntington's disease may prescribe medications to ease anxiety and depression, help with troublesome behaviors, and calm uncontrolled movements. A psychologist or social worker can provide individual or group counseling.

Physical and occupational therapists can work with patients to help them develop strength, move safely, and adjust the home environment and activities as needed.

Speech language pathologists and nutritionists can help with communication, eating and swallowing safely, and combating weight loss.

We may suggest participation in clinical trials.

Social and community support is an important part of Huntington's disease care. Family, friends, loved ones, and companions often assume many of a patient’s former responsibilities and help with daily activities and care routines when they can no longer do so themselves. Caregivers and children may also need support for the challenges and stresses that come with the disease.

The clinical research team at the Movement Disorders Center is proud to be participating in several important clinical trials that are the first of their kind.

We are currently participating in Enroll-HD

For more information, contact Alicia Leader, RN, Clinical Research Coordinator at [email protected]

 

Numerous specialists are available to help patients manage symptoms. In addition to a team of neurologists, the Huntington's Disease Clinic is staffed by genetic counseling, speech therapy, psychology, neuropsychology, and a program coordinator who can provide assistance with social support and resources in the community. The team meets in clinic the first Friday of every month.

Locations and providers can be found in the Get Care section of this page.

For more information, you can also contact, Melissa Blok, MSW, Clinic Coordinator and Social Worker at 518-262-0241.