This quilt symbolizes the commitment, individuality and level of care the HD community upholds
The Huntington’s Disease Society of America (HDSA) recently gathered patients, caregivers, providers, and other advocates for the 28th Annual Convention in Jacksonville, FL. I was invited by Lundbeck to attend and am truly grateful for the experience. The closeness of the community and stories shared immediately captured my affections, reminding me why it is important to live in the present, appreciate each personal connection, and play a part in supporting others.
Please take a few minutes to learn about HD. The battle with this genetic disease creates more hardship than many can imagine. The personal stories are heartbreaking, but coming together as a community builds a better future. The HD Memorial Quilt was on display at the convention to honor loved ones, family members and friends. This quilt symbolizes the commitment, individuality and level of care the HD community upholds.
The topics below are a few of the key highlights from the conference, but more information and some archived sessions are available through the HDSA.
Genetic Testing Requires Preparation
Predictive testing is available to determine if a child of a patient with HD has the expanded gene. In a panel providing different perspectives on testing for the expanded gene, the moderator, Lynn Ross, LMSW, shared the HDSA recommendation that anyone considering testing first go through genetic counseling to ensure the person understands the implications of knowing the results. Knowing the result, whether positive or negative, can have a major impact on relationships and planning decisions. Although family members and other factors can place pressure on the person at risk, the decision to test should be informed, carefully considered, and needs to be a personal choice.
In a session about living with a positive test result, Amy Chesire, CSW-R, MSG, shared that there is a generational shift in the perception of testing. Many at risk youth under the age of 30 have adopted the belief of, “Why wouldn’t you get tested?” to take control and contribute to research. This is a risk as the upsetting news of a positive result can lead to a reduction in quality of life and anxiety over wondering when symptoms will present. Amy shared that the goal of the social worker is to make HD a smaller part of life and not affect day-to-day functioning. Those who take a positive result as an opportunity to appreciate each day are a driving force of support and inspiration to others in the community.
Clinical Research Brings Hope
Since it is already known what causes HD and the gene can be isolated for testing and research, exciting opportunities for identifying new therapeutics are on the horizon. Funding is being backed by larger pharmaceutical companies as HD shows similarities to other diseases, such as Alzheimer’s Disease, multiple sclerosis, and Parkinson’s Disease.
Finding a therapy that can treat or even cure HD can potentially be linked to therapies for these and other disorders. As a result, funding for HD research has rapidly increased in the past 10 years, and the editors-in-chief of HDBuzz.net, Ed Wild, MRCP, PhD, and Jeff Carroll, PhD, referred to HD as “the most curable incurable disease”.
Michael Hayden, MD, PhD, a dedicated HD researcher, delivered an inspiring keynote session on new therapies. He is featured in a new documentary that can further escalate bringing attention and resources to the community .
Advocates Remain Essential
Although there has been some recent movement in legislation, there are still barriers in seeking disability coverage and fair job accommodations. One challenge is that HD has historically been diagnosed by the observance of involuntary physical movements known as chorea. However, chorea is not present in all cases of HD and can present much later than other progressive cognitive and behavioral issues, marking the need for further widespread awareness and education.
Support organizations related to these topics include the Job Accommodation Network, dedicated to providing resources and guidance on workplace accommodations, and the Caring Voice Coalition, committed to providing financial assistance and alternate coverage. Visit the HDSA Website for more about HD advocacy and how to support the community.
Learning About HD
Until recently joining Siren, I shamefully admit that I knew little about HD, but found these resources to be a good starting point.
• Searching videos to get a basic understanding immediately captured my attention, particularly this video
• This infographic Siren created in partnership with Lundbeck serves to provide basic information
• The HD Youth Organization (HDYO) provides testimonial videos from kids, teens, and young adults, along with resources for parents and professionals