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 Society of America—National program that provides a wealth of information and resources across all aspects
HD Reach—Nonprofit support network that provides medical and educational support as well as anonymous
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.
Huntington’s Outreach Project for Education, at Stanford (HOPES)— A team at Stanford University dedicated to making scientific information about HD more readily accessible to the public.
Help 4 HD International—A patient advocacy group committed to educating the world about Huntington’s disease (HD).
Huntington’s Disease Youth Organization—HD education site for kids and teens.
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 Huntington’s disease (HD) require help from a care partner, usually a spouse or other family member.1 One of the roles of a care partner is advocating for the person with HD. Here are some tips to help care partners navigate that role.register for hd
- Keep important medical documents and information ready for doctor conversations, insurance questions, or to share the responsibilities of caregiving. Compile a folder with pertinent information and keep it handy.
- Stay up to date on first aid and CPR certifications. It’s always a good
idea for Huntington’s disease care partners to be trained in the Heimlich maneuver due to the swallowing issues many people with HD face.
- 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 of Huntington’s disease.
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.
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 of Huntington’s disease.DOWNLOAD PUBLIC
Making plans for long-term care
In the early stages of Huntington’s disease (HD), living independently may only require occasional assistance from family and friends. As the disease progresses, people with HD often need long-term care.2 Plan ahead so you can make decisions about long-term care before it becomes urgent.
“The goal of
long-term care services is to help maximize functioning and quality of life.”
Your doctor or care team can recommend long-term care services like skilled nursing in your home or inpatient facilities. As you plan for your future, it is important to keep family members and close allies involved to advocate for you.
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References: 1. Claassen DO, DeCourcy J, Mellor J, Johnston C, Iyer RG. Impact of chorea on self-care activity, employment, and health-care resource use in patients with Huntington's disease. JHEOR. 2021;8(1):99-105. doi:10.36469/jheor.2021.24620 2. Imbriglio S, Goolkasian V, Murfitt A. Long-Term Care for HD. New York, NY: Huntington's Disease Society of America; 2009. Accessed January 28, 2022. https://hdsa.org/wp-content/uploads/2015/04/Family-Guide-Series_Long-Term-Care.pdf