Importance of Sharing Family History in a Huntington’s Disease Family

My grandmother, Carol, in a special bed after her symptoms worsened.

by Kathleen Langley

I am from a Huntington’s disease (HD) family. I tested negative in the 1990’s, with three siblings not so lucky, and my dad, grandmother and great-grandfather before them.

I have been raising awareness of the disease throughout Australia, as well as globally. HD is a rare, genetic, neurological disease with no cure. All children born to a parent who have tested positive or been diagnosed with Huntington’s disease, have a 50% chance of inheriting it too, and are therefore at risk, until they too can be tested.

I decided to invest some time into my family history just a few years ago. I learned through this family history that those before my dad did have HD when they died, with their death certificate sometimes stating an organ death or pneumonia, which can be brought about by Huntington’s disease. It is in your best interest that you do the same prior to going to the doctor to be diagnosed. The more history they have, the easier the diagnosis. Doctors are not always aware of what to look for with rare diseases, so doing your homework can be helpful.

Members of my family suffered from mood changes, jerking spasms, depression, losing track of themselves and their movements, leading to frustration and even anger sometimes. Caregivers and families also suffer — heartbreak, exhaustion and isolation being common.

This video can give an idea of how to better support the person with Huntington’s disease.