Jonathan
“The worst part of the condition? The end probably. Seeing my sister and my brother and the way it has affected them, but at this point I'm just trying to be positive. That's all I've ever done.”
As part of the 'Beauty of Rare' series of images we met Jonathan. He and both his siblings have been diagnosed with Huntington's disease. He kindly spoke to us about his condition and the impact it has had on his family.
"I have Huntington’s which is a really complex disease that affects you in different ways. It’s a mental illness that affects your thinking, it affects your movements like Parkinson’s and it’s Alzheimer's. Three things all in one, so it is a nightmare.
I was diagnosed when I was 26 but to be honest, I’ve always believed that I’ve had it, since I was about 17 or 18. I inherited it from my father who has died. My sister has the condition, she’s 28 and my older brother has it too. He is 36 and lives in a care home, and now I have it too.
When you initially get tested and given the diagnosis it is really hard going. It is a nightmare. I just realised that I had to keep my mind occupied and so that is why I started running. Along with working this has kept my mind busy. I used to run nearly every day and have completed marathons but because of the way my condition has affected me I have had to give it up. I have also had to finish work because I fell a few times. It was really, really hard at first because it meant I had so much time to think, but I have started doing charity work to raise awareness of Huntington's Disease and so that is keeping me busy.”
“When you initially get tested and given the diagnosis it is really hard going. It is a nightmare. I just realised that I had to keep my mind occupied and so that is why I started running.”
“If you start thinking about it, it’ll drive you crazy. You just have to crack on with your life.
There is no treatment for Huntington's Disease at the moment. It is really important that as much research as possible is done to find a treatment because it is a terrible disease.
If I was able to speak directly to the researchers and those funding it I’d say ‘It is the worst illness of all time. They need to keep on fighting for the people like myself and my family because we’re all fighting for the research ourselves, every day.”
“If you start thinking about it, it’ll drive you crazy. You just have to crack on with your life.”
What is Huntington’s Disease?
Huntington’s disease is an inherited illness caused by a faulty gene in your DNA (the biological ‘instructions’ you inherit which tell your cells what to do). If you have Huntington’s, it affects your body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate your body’s activities. It can cause changes with movement, learning, thinking and emotions. Once symptoms begin, the disease gradually progresses, so living with it means having to adapt to change, taking one day at a time.
Every child conceived naturally to a parent who carries the Huntington’s gene has a 50% chance of inheriting it. You can live with the faulty gene for years without symptoms, but if you do have it, at some stage you will develop symptoms. It is impossible to know when these will start.
Huntington’s disease affects both men and women and usually develops between the ages of 30 and 50, but can start at any age. If you develop symptoms before the age of 20, this is known as Juvenile Huntington’s disease. There is no cure at this time."
VIEW THE OTHER STORIES IN THE BEAUTY OF RARE EXHIBITION
If you wish to discuss this project or reproduce any images or story, please contact ceri@samebutdifferentcic.org.uk. The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)