I am a neuropsychologist doing research into the social history of Huntington's Disease (HD) in Australia as part of a postgraduate thesis through the Unit for the History and Philosophy of Science at the University of Sydney, under the supervision of Dr Rachel Ankeny.
In addition to looking at the history of HD from the perspective of the doctors and researchers who have written about it, we want to find more about how families thought about and managed HD prior to the formation of the state HD Associations in the 1970s. What difficulties did families face? What kind of discrimination did they experience? What support was available? How did the wider community react to families affected by HD?
The project will explore the way HD was described in the medical literature, but we also want to learn more about the experiences of people with HD. One method is to look through medical records of those who were admitted to mental health facilities. The earliest arrival we know of is 1842, but perhaps there were others earlier.
We can do some of the research from currently published sources, but in order to more fully explore the past experiences of HD families, we need to find out who the people were. If you have looked into your family history, or would be happy for me to help trace your family's HD background, we would greatly appreciate hearing from you.
Privacy concerns are extremely important in this project, and when this information is collated, no names or other identifying information will be published. We will not be collecting information on any living person without their written permission.
If you would like to help out with this research, or would like to find out more, please contact Therese Alting by:
After you contact me, I will send out an Information Sheet and Consent form if you wish to be involved. Thanks for your interest.
Therese Alting