You’re not alone. Thousands of people all over the world have been there and have built networks to support each other, raise awareness, and start fundraising efforts to support HD research. Here are just a few Huntington’s disease support groups:
Huntington’s Disease Society of America—National program that provides a wealth of information and resources across all aspects of HD.
HD Reach—Nonprofit support network that provides medical and educational support as well as anonymous genetic testing.
Family Caregiver Alliance—Service provider and advocacy organization for caregivers of adults, that sponsors both in-person and online support groups.
Reddit—Active support for anyone in the HD community.
Help 4 HD International—A patient advocacy group committed to educating the world about Huntington’s disease (HD).
Huntington's Disease Youth Organization—Support and educational resources for young people 35 and under, and families impacted by HD.
National Society of Genetic Counselors—Locator tool for in-person or virtual visits with a genetic counselor.
Join Teva’s Honestly HD Facebook page
HD-focused group created to connect anyone touched by HD, and reinforce the message that the strength of community will help them brave a future with HD.
Care partner support
People with progressive HD require help from a care partner, usually a spouse or other family member. One of the roles of a care partner is advocating for the person with HD. See how other care partners have navigated this role.
Hear from realcare partners
Stay prepared
- Keep important medical documents and information ready for healthcare provider conversations, insurance questions, or sharing caregiving responsibilities by keeping a folder with important information on hand.
- Stay up to date on first aid and CPR certifications as people
with HD may face swallowing issues, among other complications. - Create a plan together so you both have an understanding of
future goals and expectations as symptoms evolve.
Talk about HD
Explaining HD to friends and relatives will give them a better perspective on what your boundaries
might be. Things like turning down invitations or requesting that gatherings be small and
uncomplicated are less likely to be met with resistance if others understand why. This communication
can also help you build a network of support and raise awareness.
Inform public services
- Local police, firefighters, or even EMTs might be unfamiliar with HD and its symptoms. Be proactive and reach out
with information so they’ll know how to react if they have to respond to a situation involving the person with HD. - Keep emergency information handy. Put a card with important info about HD and emergency contact numbers in a wallet or purse.
SERVICE RESOURCES
Talk about HD
Explaining HD to friends and relatives will give them a better perspective on what your boundaries
might be. Things like turning down invitations or requesting that gatherings be small and
uncomplicated are less likely to be met with resistance if others understand why. This communication
can also help you build a network of support and raise awareness.
SERVICE RESOURCES
Making plans for long-term care
In earlier stages of HD, only occasional assistance from family and friends may be required to live independently. Over time, this may change. Plan ahead to help make decisions about long-term care before it becomes necessary. Share your wants and needs with loved ones in case they need to speak on your behalf.
“The goal of
long-term care services is to help maximize functioning and quality of life.”
—HDSA.org
Your healthcare provider and care team can recommend long-term care services. It is important to keep care partners and loved ones involved and informed to help advocate for you as well.
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