Hi everyone, I’m Charlotte, a 25 year old from the North East of England. Thank you so much for checking out my page! I’m taking on the UK 3 Peaks Challenge in the first weekend of August 2022 for the Huntington’s Disease (HD) Association. I will be climbing with 3 of my friends, Carly, Chloe and Rebecca who are also impacted by HD.

I’d like to take this opportunity to educate the readers of my page on the disease as I’m posting this in May, HD awareness month. 

HD is a rare genetic inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. It's degenerative nature means the symptoms for the condition are not present at birth, but rather progress through life, affecting adults and sometimes children (Juvenile HD) with symptoms most commonly starting between 30 - 50 years old. It’s an incurable terminal illness, with life expectancy usually 10-15 years following symptoms starting. 

There are 8,000+ people in the UK with the disease, 1 of those being my amazing mum. My beautiful Nan lost her battle to HD in December 2021 after a 20+ year struggle. 

Symptoms of the condition are categorised into 3 areas: movement, cognitive and psychiatric disorders. Therefore, impacting pretty much every single function in the body. 

Movement symptoms include involuntary jerking (chorea), muscle problems, abnormal eye movements, impaired gait, posture & balance and difficulty with speech and swallowing which often leads to interventions like peg/tube feeding and/or weight loss. 

Cognitive symptoms include difficulty organising, prioritising and focusing on tasks. Lack of impulse control that can result in outbursts, acting without thinking, lack of awareness of one’s own behaviours and abilities, slowness in processing thoughts or ‘finding’ words and difficulty learning new information. 

Psychiatric disorder symptoms include feelings of irritability, sadness or apathy, anxiety, social withdrawal, insomnia, fatigue and loss of energy and suicidal thoughts. 

I think the sheer scale of the symptoms the disease covers just shows it’s destructive, heart-breaking nature. During the pandemic, nursing homes closed there doors to all visitors and due to my Nans vulnerability and inability to move from bed, it made visiting impossible initially. I couldn't cope with being without her, knowing she was going through such distressing pain and suffering everyday so I decided to get a 2nd part time bank care job at her nursing home, alongside my HR 9-5 role, working 70+ hours some weeks just so I could be with her and look after her. It was one of the best decisions I've ever made and I'm so grateful for that opportunity. 

I cared for my Nan for many years and as a teenager I had to quickly learn to cope as a young carer for somebody with a very complex condition and needs. I experienced people accusing her of being drunk because of her involuntary movements, slurred speech and impaired gait - something somebody with a terminal illness does not need whilst they're trying to do everyday things like shopping, which is already so difficult. As a 14 year old granddaughter, I remember feeling so angry at people's ignorance but I know now it's my responsibility to educate others and raise awareness on the disease and how to be kind to anybody who may have it. 

I slowly watched her fall victim to the disease, for the last few years of her life she was bed bound, couldn’t walk, talk, eat or even drink water. Despite this, she never ever lost her ability to love and she did that so incredibly well. She never once complained and showed unwavering gratitude to anybody who helped her, even in her final days. Her love was so unconditional and taught me lessons in life I’ll carry forever. My mum is equally as strong and makes me so proud to be her daughter. 

After loving and losing my Nan, I now have to be ready to battle through it again with my beautiful mum. Like so many other HD families, this aspect of the disease is often the most difficult to deal with. Its like a nightmare, happening again and again and there’s no time to process things, because you’re always waiting for the next degenerative symptoms to arise. I gave my everything to caring for her and I do the same for my mum in the coming years. 

Due to my mum having the disease, my sister and I have a 50/50 chance of being a gene carrier and one day in the near future being told I too have the terminal illness. When the time is right for us individually to find out, a blood test will determine our diagnosis. The very real possibility of having the disease myself means living life to the full and doing everything I can to help those around me.  

Through grief for my Nan and the never-ending anticipatory grief of watching my mum become more unwell everyday, I have found peace in sharing my experiences with an incredible HD community. I have become a HDYO Ambassador, another amazing HD charity - https://en.hdyo.org and I love everything I get to be involved with through this role. I got to speak at a global conference and share my story and positive outlook with hundreds of people, clinical professionals and pharmaceuticals working hard on a cure. Sharing my experience has helped me make many friends going through the same thing which gives me hope for a somewhat sometimes very scary future. 

The HDA have provided my family with endless support, from teams chat, phone calls and home visits to mum. Their specialist advisors delivered training in my Nana’s care home to ensure staff knew how to ensure she was comfortable and well taken care of, given the complexities the disease presents. They're always just an email or a phone call away and know exactly what you're going through. They have links to medical professionals and research organisations, providing us in the HD community hope for the future in treatments and a cure. 

I want to do everything in my power to spread awareness, raise funds and do anything I can to contribute to the efforts to find a cure. To date, I’ve raised nearly £6,000 for Huntingtons Disease charities and I won’t stop until it’s a disease of the past.

I’m looking forward to climbing Ben Nevis, Scafell Pike and Snowdon over a weekend with 3 equally inspiring ladies impacted by HD in their own way. The hikes actually fall, on my Nana’s first birthday in heaven - not something we planned but definitely a sign when I realised the dates that’s she’s always with me. 

Thank you for taking the time to read my story and even if you can’t donate, I hope you feel you know a little more about HD. Awareness for HD and rare diseases like it can only be positive and give those impacted more chance of understanding, when battling everything life with a rare disease brings. 

💚

https://www.hda.org.uk

Read more about our story here - https://www.imnotdrunklifestyleblog.co.uk/post/story-time-charlotte