It may be difficult to talk with people about Huntington’s disease (HD). Many people don’t know much about the condition, and you might not know what to say about it.

Whether you have HD or take care of someone who does, it can be easier to talk about HD if you’re prepared. You can also connect with a social worker to help before you start these conversations. 

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Talking with specialists about HD

If you’re at risk for HD, you may want to get some information about the disease. Speaking to your doctor can be very helpful so you can get all of your questions and concerns addressed.

The decision whether or not to take an HD predictive genetic test can be difficult. Not everyone wants to know if they will develop HD one day. You should make the choice that is best for you and your family.
 

  • Speak with your neurologist, or genetic counselor about the pros and cons of taking the genetic test
  • Talk with a genetic counselor about genetic testing, including timing, confidentiality, and a support system
  • Make an appointment with a social worker or psychologist to help you process your thoughts about it
  • If you choose to move forward with the test, it may be a good idea to get it done at a place that is knowledgeable about HD. Some centers use the HDSA guidelines
  • Your primary care physician can refer you to a neurologist who can tell you about what it means to have HD and give you proper resources for further education
  • Find out how a care team can help. Huntington’s disease is an illness that affects your movement, emotions, and behavior. Therefore, it is beneficial to go to specialists who can manage your specific symptoms
  • You might not know which specialists to go to for your symptoms. However, if you keep the lines of communication open between you and your doctor, he or she can refer you to a specialist(s) who is/are right for you

If you are interested in having children, discuss your options with your doctor. There is no “right” or easy choice. Your doctor, genetic counselor, or fertility specialist can tell you more about options, including:
 

  • Prenatal testing (performed during pregnancy)
  • Preimplantation genetic diagnosis, which involves testing fertilized embryos through IVF
  • Sperm or egg donors
  • Adoption or fostering
  • As your HD advances, you may need a caregiver. Your doctor can help you figure out what kind of care you may need, so you and your family can make an educated decision
  • It’s likely that someday you will not be able to continue working. A social worker can help you prepare and plan for this possibility. They can also help you understand what your options are, up to and including disability benefits
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Telling others about your HD

  • It may be helpful to write down everything you want to say. It’s easy to forget or lose track in the moment
  • Your loved one may not know what HD is or be familiar with the symptoms. You can point them to a resource that helped you, or bring them to speak with your doctor
  • Let them know you will need their support
  • If your family member seems ready for this conversation, sit down and calmly tell them you have HD. The way you say it can be just as important as what you say
  • Explain what HD is, the symptoms, and how the disease progresses
  • Tell your family that HD is genetic. Every child of a parent with HD has a 50/50 chance of getting it
  • It may be difficult to know how and when to talk to your children about HD. Resources on what to say and when to talk to your children are available
  • Consider a trained professional such as a psychologist or counselor who can help them open up about their worries, anxieties, and fears
  • Reassure them that they can come to you with any questions or concerns
  • If you decide to tell your manager or coworkers, a social worker can help you figure out when it’s the right time to do so and legal resources can help you understand your legal rights as a person with HD
  • Figure out just how much information you are willing to share
  • Talk to your manager if you need any changes made to your workplace
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Talking to someone with Huntington's disease that you're caring for

Being a caregiver to a person with HD can be challenging. You want to make sure that you’re doing everything you can for your loved one, while also taking care of yourself.  Take a look at these tips on talking about your role in the life of someone with HD.

  • Ask the person you’re caring for what has helped them the most during your care. As the caregiver, you want to know what you can keep doing
  • Talk about what they think you should stop doing. Oftentimes, you may get caught up in the routine and the person with HD may not be benefiting from it
  • Remember to tell the person with HD what’s happening in your life. The bond between you and the person you’re caring for depends on more than the daily to-do list
  • Remember that you can always ask for help if you need it
  • Discuss ways the patient may be requiring too much of you as a caregiver, either emotionally or physically. Caring for yourself will make you an even better caregiver
  • Figure out if other caregivers can also become involved to lighten your load or take on aspects of care that are beyond your abilities to perform
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You Are Not Alone

A support group could connect you with others who understand what you are going through.
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Join the Fight

Help make a difference in the HD community by volunteering.