The month of May is Huntington’s Disease Awareness Month, in which a special effort is made to improve awareness about this devastating rare disease. This year, the Huntington’s Disease Society of America (HDSA) is encouraging families impacted by the illness to share their experiences on social media using the hashtag #LetsTalkAboutHD. As a inheritable genetic disorder, the disease can impact families for generations, but not always in the same ways. Sharing stories is an essential aspect of helping foster awareness.

About Huntington’s Disease

Huntington’s disease is an inheritable disorder that causes brain cells to die. This is a long term, progressive, and ultimately lethal disease that causes severe debilitation over time. The disease is caused by a genetic mutation that affects the HTT gene. It normally appears between 30 and 50 years, but in rare cases it can occur before age 20. Symptoms of Huntington’s may first appear as subtle mood and behavioral changes and loss of coordination. Other symptoms include random movements called chorea, abnormal posture, sleep issues, trouble chewing, swallowing, and speaking, dementia, anxiety, depression, and impulsivity. Nine percent of deaths are the result of suicide. Treatment for Huntington’s disease is symptomatic, with no cure or disease altering therapies available. The life expectancy post-diagnosis is around 15 to 20 years. You can learn more about Huntington’s disease by clicking here.

How to Get Involved

We’ve embedded a video from the HDSA  about the #LetsTalkAboutHD campaign below. To access a toolkit and other resources for the campaign, click here.

Improving awareness about Huntington’s disease and other rare illnesses is critical to improving the lives of rare disease patients around the world. Only when we become aware of a problem can we begin to process of trying to solve it.

To learn more about the activities of the Huntington’s Disease Society of America, click here.