Charlotte Conn
Charlotte's Great North Run
Fundraising for Huntington's Disease Association
Story
My name is Charlotte and on the 12th of September I’m running the Great North Run for the HDA. The charity has been extremely close to my heart now for 15+ years and I’m going to share why. 91% of those with the disease say people they tell about HD do not know what it is. I’m hoping with this page I can shed light on that, even if it is just some insight for our friends and family.
I’m a little nervous about sharing our story but Huntington’s Disease is a huge part of my life and it’s important for me to do everything I can to help others impacted by it, raise awareness and hopefully make a small contribution to finding a cure. Some of this may come across as negative but as a family, we’re extremely grateful for every day we get together, our experiences have brought us very close.
What is Huntington’s Disease?
HD is a rare, genetic neurodegenerative disease that occurs due to a faulty gene on chromosome 4 which slowly kills neurons in multiple areas of the brain. HD affects the body’s nervous system, the network of nerve tissues in the brain and spinal cord that coordinate your body’s activities. It’s an incurable, terminal illness and anyone with the faulty gene has a 50/50 chance of passing the gene onto their children, it’s often compared to tossing a coin.
The disease has been described by doctors globally as ‘the cruelest and most devastating disease’ they come across with combined symptoms of Parkinson’s, Motor Neurons Disease, Dementia, ALS, Schizophrenia, Depression, and Anxiety. It completely takes over the human body and slowly shuts down things you use for everyday functioning. Symptoms usually affect three main areas: movement, cognitive functions, and behaviour.
There are around 8,000 people with the disease in the UK and 2 of those 8000 are the two most important women in my life, my beautiful mum and Nan. My great nana passed the gene to my nan and my nan to my mum. My amazing sister and I have a 50/50 chance of carrying the gene and developing the fatal disease in our adult life. Our focus is on mum and nan and we live in hope that’s not the case and have learned not to fear that outcome after all nobody knows what tomorrow brings.
The early stages of the disease symptoms include uncontrollable muscular movements; stumbling and clumsiness; chronic pain; lack of concentration and short-term memory lapses; depression and changes of mood and personality. Symptoms of the
middle stage of the illness often revolve around changes in muscles and movement, although changes in behaviour may also become more significant and challenging too. My amazing mum is at this stage of the condition but her strength and courage is astounding, anybody who knows her will understand what I mean by that. She is never anything but positive and optimistic despite everything she goes through, there are no words for how proud we all are of her.
In the final stages, patients experience difficulties with weight loss and nutrition, speech and swallowing, movement and stiffness, and communication. Unfortunately, my Nan is in the final stages of the disease and experiences all of these symptoms. She is fed through a peg, cannot eat or drink, and cannot communicate unless through touch or a simple thumbs-up. Being her carer for 10+ years means
I can pretty much read her mind and know what she wants from her body language. When I say we’re inseparable, we’re pretty much telepathic! I feel so lucky to have such an incredible relationship with her, her strength inspires me every day. She’s just as amazing as my mum still laughs at my terrible jokes, gives the best hugs (when she can), and is beyond grateful for anybody’s company. During COVID-19, I became a part-time carer in her nursing home to ensure I am there for her no matter what, just as I know she would be for me.
Despite the immense challenges Huntington’s Disease has presented us with, the disease doesn’t define our family, it’s just given us more reason to make the most of every day.
The HDA has provided my family a lifeline on many occasions, their specialist nurses have offered advice on the best care to give and other things we have to consider as a family living with the disease. They are a listening ear for my mum as well as delivering specialist training for my Nan’s care home staff in delivering the best means of looking after her. Their specialist advisors are always on hand to talk to, even for me as a carer, sometimes it’s nice to speak to people who understand. The charity does remarkable work for families like us all over the UK.
If you’ve got this far, I’d like to say thank you for even following my link. As I’m sure you can tell, this means so much to us all. No donation is too small and if you are unable to donate, I hope reading this has increased your awareness of the disease’s effects and also our willingness as a family to fight it every day.
You can read more about our HD story here on my lovely friend Ashley’s blog:
https://www.imnotdrunklifestyleblog.co.uk/post/story-time-charlotte
I’m a little nervous about sharing our story but Huntington’s Disease is a huge part of my life and it’s important for me to do everything I can to help others impacted by it, raise awareness and hopefully make a small contribution to finding a cure. Some of this may come across as negative but as a family, we’re extremely grateful for every day we get together, our experiences have brought us very close.
What is Huntington’s Disease?
HD is a rare, genetic neurodegenerative disease that occurs due to a faulty gene on chromosome 4 which slowly kills neurons in multiple areas of the brain. HD affects the body’s nervous system, the network of nerve tissues in the brain and spinal cord that coordinate your body’s activities. It’s an incurable, terminal illness and anyone with the faulty gene has a 50/50 chance of passing the gene onto their children, it’s often compared to tossing a coin.
The disease has been described by doctors globally as ‘the cruelest and most devastating disease’ they come across with combined symptoms of Parkinson’s, Motor Neurons Disease, Dementia, ALS, Schizophrenia, Depression, and Anxiety. It completely takes over the human body and slowly shuts down things you use for everyday functioning. Symptoms usually affect three main areas: movement, cognitive functions, and behaviour.
There are around 8,000 people with the disease in the UK and 2 of those 8000 are the two most important women in my life, my beautiful mum and Nan. My great nana passed the gene to my nan and my nan to my mum. My amazing sister and I have a 50/50 chance of carrying the gene and developing the fatal disease in our adult life. Our focus is on mum and nan and we live in hope that’s not the case and have learned not to fear that outcome after all nobody knows what tomorrow brings.
The early stages of the disease symptoms include uncontrollable muscular movements; stumbling and clumsiness; chronic pain; lack of concentration and short-term memory lapses; depression and changes of mood and personality. Symptoms of the
middle stage of the illness often revolve around changes in muscles and movement, although changes in behaviour may also become more significant and challenging too. My amazing mum is at this stage of the condition but her strength and courage is astounding, anybody who knows her will understand what I mean by that. She is never anything but positive and optimistic despite everything she goes through, there are no words for how proud we all are of her.
In the final stages, patients experience difficulties with weight loss and nutrition, speech and swallowing, movement and stiffness, and communication. Unfortunately, my Nan is in the final stages of the disease and experiences all of these symptoms. She is fed through a peg, cannot eat or drink, and cannot communicate unless through touch or a simple thumbs-up. Being her carer for 10+ years means
I can pretty much read her mind and know what she wants from her body language. When I say we’re inseparable, we’re pretty much telepathic! I feel so lucky to have such an incredible relationship with her, her strength inspires me every day. She’s just as amazing as my mum still laughs at my terrible jokes, gives the best hugs (when she can), and is beyond grateful for anybody’s company. During COVID-19, I became a part-time carer in her nursing home to ensure I am there for her no matter what, just as I know she would be for me.
Despite the immense challenges Huntington’s Disease has presented us with, the disease doesn’t define our family, it’s just given us more reason to make the most of every day.
The HDA has provided my family a lifeline on many occasions, their specialist nurses have offered advice on the best care to give and other things we have to consider as a family living with the disease. They are a listening ear for my mum as well as delivering specialist training for my Nan’s care home staff in delivering the best means of looking after her. Their specialist advisors are always on hand to talk to, even for me as a carer, sometimes it’s nice to speak to people who understand. The charity does remarkable work for families like us all over the UK.
If you’ve got this far, I’d like to say thank you for even following my link. As I’m sure you can tell, this means so much to us all. No donation is too small and if you are unable to donate, I hope reading this has increased your awareness of the disease’s effects and also our willingness as a family to fight it every day.
You can read more about our HD story here on my lovely friend Ashley’s blog:
https://www.imnotdrunklifestyleblog.co.uk/post/story-time-charlotte