The Huntington's disease program at Rush provides care for Huntington's at all stages of the disease through a holistic, comprehensive team approach that includes the following:
- Treatment of symptoms
- Access to clinical trials
- Education and support programs
We are a trusted resource and care provider for patients and families living with Huntington's disease, as well as those at risk for the disease.
Our program has been designated by the Huntington's Disease Society of America as a Center of Excellence since 2005. It was the first program in Illinois to receive this distinction.
What is Huntington's disease?
Huntington's disease (also referred to as Huntington's chorea) is an inherited disease that causes certain nerve cells in the brain to degenerate or waste away.
This degeneration causes uncontrolled movements, loss of mental capacities and emotional disturbance.
People are born with the defective gene, but symptoms typically don’t appear until age 30 or older. Rarely, Huntington's disease can begin in childhood.
Huntington's disease symptoms
Huntington's disease can affect a person's movements, thinking, behavior and ability to perform functions of daily living. Which symptoms appear first varies greatly among individuals. During the course of the disease, some symptoms may be more prominent than others.
Early Huntington's disease symptoms may include the following:
- Mood swings
- Uncontrolled movements
- Balance problems
Over time, the disease takes away your ability to walk, talk and swallow.
How can I get help for Huntington's disease?
The disease is passed from parent to child through a mutation in the normal gene, so if one of your parents has Huntington's disease, you have a 50 percent chance of getting it. A blood test can tell you if you have the mutated gene and if you will develop the disease.
Care for Huntington's disease at Rush
There is no cure for Huntington's disease. Your care team at Rush will focus on relieving your symptoms and helping you cope with the emotional challenges of living with Huntington's. Neurologists at Rush work closely with neuropsychologists, psychiatrists, nurses, social workers, therapists and other staff to tailor treatment to your specific needs.
We offer the following services:
- New consultations and second opinions
- Follow-up care for patients who are symptomatic, who are at risk for developing the disease, or who have tested positive for Huntington's (or, gene positive) but are not yet symptomatic
- Predictive testing
- Genetic counseling
- Research and clinical trial opportunities
- Education and support
Medicines can help manage some of the symptoms of Huntington's disease, such as the emotional and movement problems; however, they can't slow the disease's progression or stop it. Most of the drugs used to treat the disease's symptoms have side effects, including fatigue, restlessness or hyperexcitability. Your team at the Rush Huntington's disease program can help address any side effects you may experience.
It's also important for people with Huntington's to exercise and stay active because they tend to do better than those who don't.
Huntington's disease research at Rush
Our program offers a wide range of research opportunities, from basic science research to clinical studies. The goals for all research are to ease symptoms, slow the disease's progression and, ultimately, find a cure.
Rush is part of the Huntington Study Group, a consortium of clinical investigators, and offers patients and families access to the full spectrum of clinical trials for Huntington's.
Examples of research and clinical trials include the following:
- Longitudinal, observational studies of Huntington's that follow patients over many years
- Medication trials to treat different symptoms or to potentially slow or alter the rate of disease progression
- Studies focused on improving our understanding of the mechanisms and features of symptoms in Huntington's disease, including those related to physical (motor) function, thinking and behavior
- Biomarker and genetic studies
- Brain donation program
Education and support for patients and families
Providing education and emotional support to patients and families is part of our mission to deliver holistic, comprehensive care for Huntington's disease.
Educational and support group events include the following:
- Support groups held at Rush with a social worker and psychologist. Open to people who are currently living with Huntington's, at risk for developing it, or gene positive, as well as family or friends of someone with the disease
- Events aimed at raising awareness of the disease, in collaboration with the Illinois Huntington's Disease Society of America chapter
- Educational events for patients, families, caregivers and health care professionals
Why choose Rush for Huntington's disease care
- The Huntington's Disease Society of America has designated the Huntington's disease center at Rush a "Center of Excellence" for the care and study of Huntington's disease.
- The neurology and neurosurgery programs at Rush are consistently ranked among the best in the nation by U.S. News & World Report.
- Rush is part of the Huntington Study Group, a group of clinical investigators in Huntington's disease. This group has an international database that aims to increase awareness of the disease's clinical features, including the rate of its progression.
- Movement disorders specialists at Rush involved in studies of new therapies for Huntington's disease, so patients have access to the latest treatments before they are widely available. Currently, the Department of Neurological Sciences at Rush is participating in studies looking at the effects of coenzyme Q10 and creatine on the progression of functional decline in Huntington's disease, as well as the long-term safety and tolerability of the study dosage.