I first recall chatting about Huntington’s Disease ((HD) when I was approaching my teenage years. Josie diagnosed with it was a beautiful lady inside and out. I was privileged to spend time with her, she was brutally honest and told me she loved my honesty in asking questions and not hiding fears, anxieties or any questions I had. She explained as the disease progressed her speech would deteriorate and most likely no-one would understand her talking despite the fact she would be able to hear and understand everything. The one eventuality she dreaded was being a prisoner in her own body. She laid her hand on mine, my heart beating so fast and loud, I could feel it thumping so hard and echoing in my ears. She asked “you will still talk to me”. I took her hand with my other and said, “of course I will”. That day by listening I learnt a lot physically and emotionally about this disease, that it is Rare, Genetic and Terminal: Huntington’s Disease.

So what is Huntington’s Disease? It is a devastating rare hereditary disorder of the brain. The chances of getting diagnosed is 50% if you have a parent with the disease. It affects the nervous system of the body; the network of tissues in the brain and the spinal cord that coordinates your body’s activities. Everyone with Huntington’s through time will deteriorate physically, cognitively and emotionally. Till eventually they are fully dependent on the help of others, whether it is family, carers or nursing staff; or a mixture of all. Symptoms usually rear their ugly head between the age of 30 and 50 years of age, with symptoms getting worse over a period of 10 to 25 years until the person dies. Huntington’s affects between 1 and 10,000 and 1 in 20,000 people in the Uk. Unfortunately, as yet there is no cure and very little awareness.

Charities throughout the UK try their best to raise awareness, offer support those affected, etc. The Huntington’s Disease Alliance UK and Ireland ran a campaign in May 2023, HD awareness month. The campaign Family Matters. The Alliance consists of four independent charities throughout the UK and Ireland. The four charities all have the same goals and strive to help those affected by the disease, promote awareness and do their best to increase the understanding of UK wide of Huntington’s Disease. You can find a relevant organisation in your area:

@HDA_tweeting - England and Wales

@ScottishHD

@HDAAssocNI – Northern Ireland

@HDAI_ie – Ireland

Charities like these are important to get the message out there. Also to help those living with the illness, offer support, put you in the right direction in a time of need. The Scottish Huntington’s Association avidly campaigns for Huntington’s disease charities. Olympic medalist and double world champion rower, Sarah Winckless is patron. Huntington’s is in Sarah’s family on her Mum’s side. Sarah herself has tested positive for the gene. 

Josie gave birth to four children before her HD diagnosis. As statistics go their family came out on the button. The first two children tested negative for the gene, child three and child four both tested positive. Despite receiving the news of having this cruel debilitating condition the siblings both had a glass half full attitude. That zest for life and wanting to live and enjoy each day as independently as they could for as long as they could. As time goes on life becomes a struggle; food becomes an enemy through the fear of choking, talking to strangers lessens from the embarrassment of not being understood. For many this can lead to isolation.

This disease changes the daily life of everyone that is affected with it. The person diagnosed is eventually trapped in their own body; forced to accept help from others, both physical and emotional. Even the fittest and most ambitious of us, as times goes by, our bodies get consumed by HD. Families and friends do their ultimate best to help care. However at times they feel the pressure and need reassurance; we need to remember they too are fighting their own battle. Living with Huntington’s Disease not only affects the person with the disease but those living around them. It can have a massive impact on those who live in the home. When symptoms start to worsen and physical symptoms begin to progress equipment invades the house. Yes it’s a fabulous help, but at the same time another tick of the box that the disease is progressing in the direction you were hoping would take a little longer. 

Living with HD is not the same for everyone; for those affected severely with swallowing a tube feed is often fitted, some have involuntary movements, mood changes. Anxiety and depression are common with people affected with Huntington’s disease.

If you knew very little about HD I hope reading this short post has given you an insight and you have an idea of how this crippling disease not only takes over the body but haunts the minds of those affected. 

I have rarely met a person with Huntington’s that has been a complainer in life. They have such a hard deck of cards to deal with in life and yet always seem to make the most of it.

So while you may have winged about being trapped in your four walls for a few weeks or even months due to Government restrictions during COVID, remember the people that are fighting a battle all the time.