By Daniel Claassen, MD
Dr. Claassen is Associate Professor of Neurology at Vanderbilt University, and Chief Editor of HD Insights.
bout one year ago, our clinic experienced a defining moment that caused us to reassess our practice. Our HD clinic occurs every Friday, and this Friday didn’t seem very different. We saw a number of patients that day, and one patient in particular seemed to be doing quite well. He was tolerating his medications, had a good experience in physical therapy, had recently obtained disability, and was brought to clinic by his daughter and wife.
To our shock, we received a phone call three days later informing us that his daughter attempted suicide. This news was unexpected, and we realized that we had never talked to this patient’s daughter and asked how she was doing. We needed to change our clinical approach.
The burden of HD in the lives of children is substantial. In this edition of HD Insights, we address this topic of children who live with HD. I am so grateful to Martha Nance, Peg Nopoulos and Bruce Compas, who have provided thoughtful articles that address genetic testing, imaging research in HD-kids, and novel approaches that assess stress and coping in children that live with HD. I have had the pleasure of working with Kat Martin, BJ Viau, and HDYO, and we are grateful for their personal stories about living with a parent who has HD.
Ed Wild, who is working front and center with HD youth in Great Britain, offers his perspective on the trends he sees and the strength and activism embodied by the young people across the pond. We continue to feature the clinical coordinator perspective, this time with Abagail Ciriegio telling us her experience about working with children. It is compelling, trust me.
I want to thank you all for the encouraging feedback you have given regarding the last couple of issues. We start the new academic year with a new deputy editor (welcome Margy Rockwood!) and new industry sponsors (we could not do it without their support!). We remain committed to providing an informative periodical that focuses on the clinical, research and life experiences around HD.
Listen in to the new podcast, and don’t hesitate to drop us a note. (We may publish it!)