To help you take part in Huntington’s Disease (HD) Awareness Month in May—and all year long—we’ve compiled some ways to support HD awareness and those who have HD.
Keep growing your friendship.
Let any people in your life impacted by HD know a diagnosis doesn’t change your love for them by continuing to show up in the ways you always do—or even more!
Need some ideas?
- Make plans for the future: Go to the movies. Cook a meal. Call regularly to check in.
- Let them know you’re always available to talk.
- Send them articles or videos that make you think of them.
- Ask them for advice.
- Join in during awareness efforts like races, fundraisers or social media campaigns.
- Stay hopeful and ask them how you can help!
Also check out these words of advice on friendship from 19 different people with chronic illness.
One difficult thing about any chronic illness but especially HD is facing misperceptions about some of the disease’s visible symptoms. By understanding as much as you can about the disease, you can avoid being accidentally hurtful.
Learning more about HD goes a long way in showing your friend how much you care.
Here are some places to start:
- Huntington’s Disease Society of America (HDSA) is the largest nonprofit providing resources, support and advocacy on HD. Its website is rich with resources explaining the details of HD.
- Help 4 HD International hosts a podcast to share information and resources on HD, in addition to holding events and keeping a news blog.
- HDBuzz collects scientific news articles written in plain English about advances in HD-related medical developments.
- For the patient perspective, follow the HDSA #LetsTalkAboutHD campaign on social media. You’ll find many stories, photos and videos of people describing the impact HD has had on their lives.
- You can also try the HD section of the chronic illness personal account website, The Mighty.
- If books and movies are more your style, try The Woman Who Walked Into the Sea, Inside the O’Briens, The Lion’s Mouth Opens and, just released this month, Her Mother’s Daughter.
Spread the word.
Share the burden your friend and the HD community may feel to raise awareness or funds for HD. HDSA.org offers lots of opportunities to spread awareness, especially related to research fundraising and advocacy.
- Here are some ideas for to spread awareness.
- Take part in the #LetsTalkAboutHD.
- Share and follow The Guthrie Sessions at HDSA.
- Ask your friend how you can help inform others.
- If people ask questions about the illness, ask your friend if you can step in so he/she doesn’t always have to explain.
If you’d like more ideas on how to support someone with HD, try the family and friends support community, HD Lighthouse Families.