For patients, families, and caregivers
An educational source for Huntington’s disease (HD) news, information, and support
While a diagnosis of HD may change the entire family, today there’s a better understanding of the disease than ever before. Ongoing research can provide ways to tailor care, and new resources may help patients, caregivers, and their doctors to effectively manage symptoms.
Understanding how HD may affect the entire family
Becoming better educated on how HD may affect you can empower you and your doctor to make decisions now, and may help your loved ones navigate the future.
Classify and track HD disease progression
See how this classification system may help patients and HCPs to track HD disease progression.*
The care team approach
HD can affect the way you think, behave, and move. That’s why, in clinical practice, a care team (made up of different specialists) approach, led by your doctor, is needed to help manage symptoms.
Find HD support and tools
You don’t have to shoulder the impact of HD alone. HD-Now is an educational hub to learn more about HD research, available tools, potential clinical trials, and community groups to help you feel in the know, empowered, and supported.
*Please note that this classification system is being provided for information purposes only. It is used to stage people with HD for clinical trials only and is not a diagnostic classification system used in clinical practice. Patients should talk to their doctor about HD disease progression.
How HD may affect you and your loved ones
HD can affect you, your family, and your caregivers on an emotional, social, and financial level—which may have just as much of an impact as your symptoms. Learning about how HD may impact you can help you and your doctor feel empowered to plan and prepare for this disease journey.
Patient impact
Living with HD may include the following range of symptoms to discuss with your doctor that can affect how you think, act, and move.
How you think
- Problems doing daily tasks
- Memory loss
- Inability to make decisions
How you act
- Anger
- Depression
- Moodiness
- Not caring
How you move
- Inability to control movements (chorea)
- Unsteadiness
- Problems with walking
Caregiver Impact
While a family member may be a caregiver, providing care for someone living with HD has its own set of challenges. Discussing these challenges with your support community may help.
Stress
Burnout may cause you to feel mentally, physically, and emotionally exhausted.
Health issues
As a caregiver, you are used to prioritizing someone’s else’s health above your own and may even neglect your own needs.
Lack of support
The demands of caregiving may cause you to self-isolate and separate you from your own support system.
Loss
A young caregiver may give up their childhood, while caregivers of working age might end up sacrificing career advancement.
Family Impact
HD has the ability to impact the entire family in a variety of ways, such as:
Genetics
If you are a parent with HD, you have a 50% chance and added worry of passing the disease to your children.
Relationship changes
Changes in how your loved one thinks and acts may affect the way your whole family interacts and relates to each other.
Financial worries
As symptoms progress, your loved one may no longer be able to work, which may create additional financial stress with the loss of income and the cost of full-time care.
The burden of HD is real. Find help here.
The impact of HD can be felt by everyone in the family. But you’re not alone. We’ve gathered together tools, resources, and information to help you feel understood and supported on your HD journey.
- News and research
- Specialized centers
- Educational resources like the HDSA Centers of Excellence
- Support groups
- Articles
- Tools
A care team approach
The symptoms of HD are multidimensional with the ability to impact the way you think, act, and move. One consideration may be to use a care team made up of a variety of experts, which may offer a way to help manage symptoms, maximize function, and improve quality of life.
Please note that these are only considerations for you and your doctor to discuss to see what may be right for you and are not intended to provide medical advice.
HD can affect:
How you think (cognitive issues)
- Neurologist
- Psychologist
How you act (behavioral issues)
- Psychiatrist
- Social worker
How you move (motor issues)
- Physical therapist
- Occupational therapist
How you function
A genetic counselor, dietician, and speech therapist can also help with your overall well-being
Resources and Tools
Connect to HD supporting organizations in your community, learn about clinical trials, get caregiver tips to reduce burnout, and find other helpful resources and tools below.