Kathleen’s Story

Image of a woman in front of a window with her back turned

This is a story of my family’s experience with Huntington’s disease (HD).

I am the oldest child with three siblings who were all diagnosed with HD at around the same time I tested negative.

HD is rare, genetic, neurological and has no cure. All children born to parents who have been diagnosed, have tested positive or are at risk, have a 50% chance of inheriting the disease. There came a point in my life when I decided I would like to know the extent of HD in my past family history, which involved a lot of research through death certificates and hospital files. This led to an understanding of how secrecy about HD had become a stigma that could impact on any family, with mine being no exception.

My father was raised to never discuss his mother’s illness, which had worsened over time. Eventually, she was admitted to a mental asylum like so many others living with HD back in the day. It wasn’t until my dad became ill with HD years later, that my siblings and I became so aware of how this cruel disease could impact a family so much. It devastated my mother to watch her husband fall victim to the disease too, and I recall hearing the only way to stop HD was not to have children.

This information came too late for Mum, as she already had children. I’d also already had two children, not knowing the risks involved. I had considered extending our family, but upon learning about the risks involved, I stopped at two kids. Some years later, testing became available, which allowed me to tell my adult children that they too, will be okay and not inherit the disease. Things were different for my siblings who had been diagnosed. One decided not to marry or have children, while the others had children, hoping for a cure soon. Sadly, as I write our family’s story today, so many years later, that cure appears to be a long way off still, with more families facing difficult decisions.

Today, HD continues to follow and impact the next generations of families; those living with HD are often eventually completely reliant on others to care for them. Sometimes it is a spouse or other family member in the home. Sometimes it’s a facility with the carers or families realising they are unable to care for their loved one. My mum could no longer look after my dad, and it devastated her that he was forced to live in a facility. This happens all the time with families who carry the HD gene.

There are many symptoms that come with HD, which can include:

  • Jerking of the body, which leads to people being unable to feed themselves as the jerking doesn’t allow food/drink to land in their mouths
  • Mood changes, which can lead to severe depression
  • Psychosis
  • People being unable to work once their thinking becomes vague or confused
  • The inability for people to do the things they had done previously
  • Writing becoming illegible

I’ve also seen that often, while people living with HD cannot comprehend things as they once had, they are still very aware of what’s happening around them. I share our family’s story for those who I have lost in hope of raising awareness and helping present and future generations somehow!