If you or a loved one has been diagnosed with Huntington’s disease, you may have questions about what to expect and how to manage it. Huntington’s affects the brain, leading to changes in movement, thinking and emotions. While there is no cure, research continues to improve treatment options and work toward a cure.
At Banner Health, we offer expert care, advanced treatments and dedicated support. Read on to learn more about Huntington’s disease and how we can help.
Huntington’s disease is a neurodegenerative disorder that affects the brain’s nerve cells and worsens over time. It is caused by a mutation (change) in the huntingtin (HTT) gene that can be passed down from parents to children. This mutation damages areas of the brain responsible for movement, emotions and thinking.
Over time, people with Huntington’s disease lose control of their muscles, thoughts and emotions. Symptoms usually appear between ages 30 and 50 but can start earlier or later. The disease progresses over 10 to 25 years, eventually making daily tasks difficult.
Huntington’s is genetic (inherited). If one parent carries the gene, each child has a 50% chance of inheriting it. The gene mutation is passed down in an autosomal dominant pattern. This means that a single copy of the mutated gene is enough to cause the disease.
The disease affects all ethnicities but is more common in those of European descent. In rare cases, when inherited from the father, the disease can start in childhood (a form of the disease known as juvenile Huntington’s disease.)
Family members with symptoms should see a movement disorder specialist to determine if they have Huntington’s disease. Family members without symptoms who want to understand their risk should have pre-test counseling to help them decide if they want to learn if they have the Huntington’s mutation and to understand some of the limitation (or gray areas) related to the test.
Banner Health partners with our local Huntington Disease Society of America Center of Excellence to provide genetic counseling and testing.
Learn more about the causes, risk factors and genetics.
Huntington’s disease affects everyone differently but common symptoms include:
Denial of these symptoms is common. Symptoms worsen over time, making daily activities more challenging.
A neurologist can diagnose Huntington’s disease through a physical exam, family history and genetic testing. Imaging tests like CT, EEG and MRI may help detect brain changes.
If you or a loved one is experiencing symptoms, early diagnosis allows for better planning and management.
Learn more about the symptoms and diagnosis of this disease.
Although there’s no cure, treatments can ease symptoms and improve daily life.
Treatment options may include:
It’s important to explore treatment options with your provider to help create a personalized treatment plan and manage Huntington’s disease effectively.
Learn more about the treatment options available and long-term management.
Managing daily life with Huntington’s requires planning, support and a focus on well-being.
Providing care for someone with Huntington’s disease can be both rewarding and challenging. Symptoms change over time, requiring patience and flexibility. Giving your loved one extra time to complete tasks, breaking caregiving into smaller steps, and staying calm during emotional moments can help manage daily challenges.
It’s also important to take breaks and seek support to maintain your well-being. Support groups connect you with others facing similar challenges. Local and online resources offer counseling, home health care and respite care services to help you manage daily life.
If you have Huntington’s disease, taking care of yourself is just as important. Here are some ways to manage your well-being:
Thinking ahead reduces stress and ensures proper support is in place. Consider:
Palliative care can improve comfort at any stage of the disease. Hospice care can provide compassionate support for you and your loved ones in the late stages of the disease.
At Banner Health, we offer expert care, resources and guidance to support you. Learn more about living with Huntington’s disease and what support resources are available.
Ongoing research explores treatments and gene therapies that may one day slow or stop Huntington’s disease. Banner Health partners with local Huntington Study Group and CHDI Foundation ENROLL-HD registry sites to provide opportunities to participate in groundbreaking clinical research.
If you or a loved one has Huntington’s, you’re not alone. Visit our related pages to learn more or schedule an appointment with one of our Banner Health specialists.
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