Finding out that you have Huntington’s disease—or learning that you might have the gene abnormality that causes it—can feel frightening and overwhelming. But you are not alone.
If you or your family members are looking for experts to answer your questions and address your concerns, consider University of Iowa Health Care. We’re the only medical center in Iowa (and one of only a few in the Midwest) that is recognized as a Center of Excellence by the Huntington’s Disease Society of America.
This designation confirms our approach to Huntington’s disease, which includes:
- Team-based care that lets you see multiple specialists in a single visit
- Opportunities to take part in clinical trials and other types of research
- Early access to new treatments
- Genetic testing and counseling services
- Support services for you and any family members involved in your care
These services may make it easier for you to manage your symptoms—and maximize your quality of life—as your disease progresses.
Huntington’s disease symptoms and diagnosis
Huntington’s disease is caused by a genetic abnormality that runs in some families.
It’s a neurodegenerative condition, meaning it causes gradual damage to certain areas of your brain.
With Huntington’s disease, the areas of the brain affected are responsible for movement, thinking, and behavior. This means your symptoms may be physical, mental, and emotional—and they may appear in any order.
Signs of Huntington’s disease include:
Movement problems: You may have uncontrollable jerking or twitching (chorea) and repetitive muscle movements (dystonia). This can lead to difficulties with coordination and balance.
Cognitive problems: You may become forgetful or have trouble planning or staying organized. You may also have trouble with impulse control, which can cause poor judgement or loss of inhibitions.
Psychiatric problems: You may have mental health challenges such as depression, mood swings, and personality changes. You also have a higher risk of developing psychiatric conditions like obsessive-compulsive disorder (OCD) and bipolar disorder.
How Huntington’s disease is diagnosed
Depending on your symptoms, your visit may include consultations with different specialists:
A movement disorders specialist (a type of neurologist) to evaluate you for any chorea and test your coordination, balance, reflexes, and more
A neuropsychologist to see if you have any cognitive difficulties such as trouble remembering or reasoning
A psychiatrist to check for any irritability, signs of depression or other mental health problems
A genetic counsellor to take a family history and discuss the implications of genetic testing
If you show definitive signs of Huntington’s disease and one of your parents had the condition, then a clinical diagnosis can be made without doing genetic testing. If you do NOT show definitive signs of the disease but there is a family history of it, we may want pursue testing to check for the abnormal gene.
How Huntington’s disease progresses
Huntington’s gradually gets worse over time. However, the speed at which symptoms worsen varies by person. It could be anywhere from 10 to 30 years from the onset of your symptoms until you’re no longer able to take care of yourself.
We’ll work closely with you and your loved ones as your disease progresses. For example, we can help you and your caregivers anticipate how your care needs will change, so you can plan accordingly.
Huntington’s disease treatment from UI Health Care
So far, there aren’t any treatments that can slow or stop the progression of Huntington’s disease. But with the right care from the right experts, you can manage individual symptoms, making it easier to live with your condition.
The treatments you’ll need depend on the symptoms you have. Your customized care plan may change over time, and include:
- Medications to reduce involuntary muscle movements, improve irritability, or help psychiatric symptoms. Our pharmacist can review your medications and discuss new ones that may be prescribed.
- Support services to help you manage at home and in the community
- Occupational therapy to teach you easier ways to perform everyday tasks
- Physical therapy to improve strength, flexibility, balance, and mobility
- Speech therapy to help you manage speech or swallowing problems
- Mobility aids (such as canes and walkers) to help you get around
You can also enroll in Huntington’s disease clinical trials. These scientific studies let you try promising new treatments before they’re widely available.
One-stop, team-based care
Our Huntington’s disease specialists come together to care for you in a shared space. This means you can see all of your providers in a single visit. Our Huntington’s disease social worker is your primary contact person; she brings it all together for you.
Another benefit of our team-based approach is that all your providers can quickly and easily communicate with each other. You can take comfort knowing you have multiple experts involved in your care plan.
Our team also includes pediatric neurologists who care for children with juvenile (early-onset) Huntington’s disease.
Genetic testing for Huntington’s disease
Our certified neurogenetic counselors have unique expertise in inherited neurological disorders like Huntington’s disease. We routinely coordinate genetic testing for patients and their first-degree relatives (parents, siblings, or children).
That’s because with Huntington’s—and many other genetic disorders—if one of your parents has the abnormal gene that causes it, you (and your siblings) have a 50/50 chance of inheriting it. And if you have the abnormal gene, there is a 50/50 chance you’ll pass it to your own children.
Who should consider genetic testing?
There are two main reasons you might consider genetic testing for Huntington’s disease:
- You have chorea, and the neurologist feels that it may be caused by Huntington’s disease. Even if you don’t have a family history of Huntington’s, you could be the first person in your family to have the gene abnormality.
- You don’t have features of Huntington’s, but you have a family history of the disease. This type of testing is known as pre-symptomatic or predictive genetic testing.
Choosing whether to have a genetic test is a personal decision. If you’re considering it, our genetic counselors will help you understand what type of information the test provides and how it might guide your treatment decisions. This will help you make an informed decision about whether genetic testing is right for you.
Our Huntington’s disease social worker hosts a monthly support group for anyone impacted by Huntington’s. This includes:
- People who are at risk for (have a family history of) the disease
- People who have Huntington’s disease
- People who take care of a loved one with Huntington’s
Through this group, we aim to create an environment that encourages sharing, learning, and bonding with your peers.
We sometimes bring in speakers who present on topics related to Huntington’s disease, such as:
- Financial planning
- Long-term care planning
- Nutrition therapy
- Physical therapy
Meetings take place from 1 to 3 p.m. on the fourth Sunday of each month, at the North Liberty Public Library. The library is located at 520 W. Cherry St. in North Liberty, Iowa.