Charlotte with her Dad on the number 1 bus he used to drive
Charlotte with her Dad on the number 1 bus he used to drive

May is Huntington’s Disease Awareness month. While only around 6,700 people in England and Wales are affected by the disease, unfortunately for me my family is among them.

My dad was a proud Pompey bus driver, but in his late 40s customers kept reporting him for drinking on the job – he was slurring his words and swayed when he walked. It was painful for my dad to hear these accusations because he didn’t ever drink much and he took his job very seriously.

It turned out these were the first signs of Huntington’s Disease. We weren’t aware it was in our family until my uncle was diagnosed with it, and we found out my nan had passed away from it at 55. Unfortunately, my dad was exhibiting symptoms.

After a positive test, my dad had to quit his job, give up his bus and driving license and face the reality that he had a rare, genetic disease for which there is no cure.

I was at college when my dad was diagnosed and my life, along with that of my mum and sister, were turned upside down overnight. Knowing there was no cure and that my dad would face increased involuntary movements, dementia and the inability to eat and speak was hard to get our heads around.

In an attempt to turn around a feeling of powerlessness at 18 I organised my first big event. The Wedgewood Rooms kindly lent me The Edge of the Wedge for free to hold a fundraiser gig for the Huntington’s Disease Association – the only charity that supports those affected by the condition.

I felt so grateful for the love and support of the Portsmouth community – bands and musicians performed for free, local business owners made donations to the raffle – all of which helped me to raise £1,000 for the charity. My dad came along too, and he was so made up that a packed room of over 100 people cared that much about him and the future of those living with HD.

While my dad managed to live independently for a several years, his mental and physical health quickly deteriorated and we had no choice but to house him in a care home.

With the support of the Huntington’s Disease Association, they helped us find care homes that understood the disease and my dad’s needs. As the years went on, my dad drifted further and further away from us, unable to speak or communicate. It was hard to fight back the tears at every visit.

For those that don’t know much about Huntington’s Disease, those affected don’t die of the disease itself – they die from a symptom of it. My nan had eventually lost her ability to swallow and so died of hunger. My dad eventually developed pneumonia and after a week at QA Hospital, and with medics doing as much as they could to try and save his life, he passed away. He was just 58 years old. Sadly, my uncle passed away shortly after, aged 60.

So far three members of my immediate family have been taken by this disease and we live in fear about who will be affected next. The disease is genetic – with children of those affected facing a 50:50 chance of inheriting it. Everyone unfortunate enough to have it in the generation before me, have now lost their life.

It’s quite straightforward to get tested, but testing levels tend to be low because if you’re found to have it, there not being a cure can feel like a death sentence. It can also be difficult to get a mortgage or life insurance because even though most don’t become symptomatic until later life, you will always be viewed as high risk and will be penalised. It’s why I’ve been reluctant to get tested myself.

There is a ray of hope, though. Gene therapies potentially offer a treatment which could mitigate the condition and human trials are ongoing. Despite this, whenever I think about my future, I feel unable to breathe. There’s so much uncertainty, at least for now. 

I am so grateful for the scientists and medical community working hard to find a cure. After all, one day their research might just save my life. More than anything, though, this condition puts into context what it is so special about human beings: we are creative and, when we apply our intelligence to solving problems, there are no limits. 

That’s why I’ll always fight for a society where resources are allocated to things like medical research, education, housing and elderly care. It’s why I’m a socialist: because anyone can be subject to misfortune and every problem can be solved through cooperation and collective action.


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