Juvenile Huntington’s Disease Short Story Series Introduction
The following is a series of fictional short stories from the perspective of someone with Juvenile Huntington’s Disease. These works do not represent the experience of any one individual, nor do they aim to encompass the entirety of an illness experience such as JHD. Rather, these stories strive to capture and explore themes presented across different JHD and HD experiences through a collection of punctuated narratives. Hopefully, engaging with JHD through storytelling will allow readers to better empathize with, and understand the nature of, the experience of this illness.
Resources
- Huntington’s Disease Society of America (HDSA) JHD Family Guide Series
- HDSA is a non profit organization “dedicated to improving the lives of everyone affected by HD.” Their network of resources, both on and off line are a valuable source of support in the HD community.
- HDSA Centers of Excellence
- HDSA has named 39 medical centers across the country as Centers of Excellence, so deemed for their multidisciplinary approach to HD and JHD care.
- HDSA JHD Resource Directory
- JHD Handbook: A Guide for Families and Caregivers
- Huntington’s Disease Youth Organization (HYDO)
- HDYO is an international non-profit that is designed specifically to provide support for young people around the world impacted by HD. They offer a JHD specific and general resource directory, basic JHD information, an “Ask a Question” feature, and more.
- Help4HD/Help4JHD
- A non-profit whose mission is to “educate the world about HD and JHD… and to serve resource centers to provide information, education, resources, and care.”