In September 2013, several HOPES student researchers attended the Huntington’s Disease World Congress, held in Rio de Janeiro, Brazil. Summaries of the all the sessions attended can be found in the Conferences and Conventions section of our site.
The HOPES trip to the 2013 World Congress received partial support from the Bingham Fund for Innovation in the Program in Human Biology.
Coping Skills Session
One of the most difficult ideas to accept about Huntington’s Disease is that (currently) there is no cure or treatment: it is fatal and devastating. Given this harsh reality, some of the most important skills for patients and their loved ones to acquire involve those associated with coping. On the second day of the HD World Congress in Rio de Janeiro, three lecturers shared their research and personal experiences about how to cope in a world with HD.
Suicidality in Huntington’s Disease^
The first lecture entitled “Suicidality in Huntington’s Disease” was given by the researcher Aam Hubers from the Netherlands. Hubers explained that HD patients are between two and eight times more likely to commit suicide, amount to 5.7% of HD deaths coming from suicide. Five to ten percent of HD patients attempt to commit suicide, and on average at least 11% of patients admit to having had suicidal ideation within the most recent month. Suicidal ideation occurs most when patients begin having possible symptoms of HD, meaning that 20% of newly premotor symptomatic patients and newly motor symptomatic begin having suicidal ideation. These patients are more likely to use antidepressants, have a depressed mood, and tend to be more aggressive and anxious. Given these disturbing statistics, Hubers explained how her future research was aimed at discovering how HD patients who experienced suicidal ideation coped and resisted making a suicide attempt. Her data collection revealed the pressing necessity for a deeper exploration of how HD specifically can cause psychological problems and how those problems can be addressed with and without medication.
The second lecture, “Gene Veritas”, was presented by Kenneth Serbin from the United States. Serbin explained that his mother and himself had both tested positive for the HD gene, and after her death he began to search for ways to cope with what seemed like a death sentence. Serbin mentioned twelve of the coping strategies that he had written about on his blog so far at cureHD.blogspot.com. These included:
-Learning about the disease
-Gaining discipline from exercise
-Having a healthy diet
-Studying available supplements (creatine, CoQ, Omega 3, blueberry concentrate, etc)
-Going to support groups and psychotherapy
-Finding a passion in life
-Doing “neurobics” (mental aerobics) to increase BDNF in the brain
-Going public about having HD to overcome denial and stigma
– Becoming an advocate to connect with people
-Assisting with research studies
Serbin uses these coping skills and more, he explained, to be proactive in his own health and the HD community. With the current state of scientific research, Serbin genuinely believes that testing positive for HD is no longer a death sentence if one takes control of their HD diagnosis now.
Living with HD^
The third and final lecture in this session was entitled “Living with HD – Then and Now” and was given by Charles Sabine from the United Kingdom. Structured mostly as a motivational presentation, Sabine told his story about HD in his family. His father was diagnosed with HD in 1984, and surrounding that diagnosis were fear, shame, and ignorance. In 2005, Sabine and his brother both tested positive for the gene, but Sabine used his own diagnosis as a platform to emphasize the power of patient organizations in the HD community. He utilized his position as a public figure to support the passage of the Genetic Information Nondiscrimination Act (GINA) in 2008 in the United States, which protects Americans from discrimination against employers and insurance companies based on genetic information, and gave media coverage in Britain of HD organizations, events, and bills, which he continues to do today. Sabine closed his lecture noting that testing positive for HD in the present is a much less negative experience than in the past specifically because of amazing outreach done by patients and their families.
These three lectures shared one common, inspiring theme: though there is not currently a cure for HD, there is still hope! Whether it is hope for a treatment, for personal longevity of life, or even just hope for support from the HD community, there are always ways to maintain a positive outlook on living with HD if one manages to realize the exciting possibilities the future holds for curing this disease.
C. Bartlett 2013