We spoke to Camilla who took part in one of our #HDHike challenges to find out why she wanted to fundraise for the Huntington's Disease Association, how she found the challenge and what she has got planned for this year.
What was your challenge for #HDHike?
"My 2021 #HDHike challenge was to walk 100 miles throughout May with my sidekick Casper [the dog]."
How did you find your #HDHike challenge?
"I enjoyed being out in nature with Casper and loved trying new walks and taking lots of photographs and videos. #HDHike was challenging as Casper is lead-reactive and not everyone is respectful of giving him space. A 100 miles over 31 days might not seem difficult, but for me it really was, because I was afraid of what might happen to Casper, as we have had many run-ins with other dog owners who are not so considerate and this has led to arguments, dogs biting Casper and ripping my t-shirt open to name a few. Pushing through did help, and I know I have, like many others in the Huntington’s community, there are much harder challenges ahead."
Why were you fundraising for the Huntington’s Disease Association?
"To understand why I fundraise for the Huntington’s Disease Association you will need a little background on me and my family. My Huntington’s story goes back to 2013 when my great uncle was in hospital in his final stages of dementia, and I went to support my great auntie. We had no idea what had been going on with them both as they had shut everyone out of their lives. It’s a complicated story, you see we didn’t know anything about Huntington’s disease until I started looking after her."
"As soon as I found out Huntington’s disease was a possibility in my family I requested to be tested. I have two children which I would have had differently if I had known about Huntington’s in our family. I was given the green light to get tested, however, my dad who also wanted to be tested wasn’t allowed, and it took him four years to be tested. I needed my parents to have the support and help in place before I got my results because if I had it, it would confirm my dad had it too. My dad received his genetic results in July 2021. He had a cag repeat of 42. The day after my dad had his test results, I contacted my genetics team to ask to be put back on the list, five years since I was given the green light to be tested."
"On 12 July 2022, I received my genetic test results. This unfortunately came back positive also with a cag repeat of 42, meaning that at some stage I will develop Huntington’s disease."
Can you tell us about first discovering what Huntington’s disease was and how you navigated it?
"When looking after my great auntie I knew something was not right and it wasn’t just grief. It took me four years to actually get my great auntie diagnosed with Huntington’s."
"Every aspect of her care over the next five years was a battle until she sadly passed away in March 2018. Many health and social professionals came in and out of my great auntie’s life. Closing her case because of non-compliance. This just made me fight harder. Eventually her Community Psychiatric Nurse gave me a few different potential diagnoses, one of which was Huntington's disease. I googled them all and quickly disregarded Huntington's as we had no family history. Sadly in 2017 I received my great auntie's genetic results, and she was positive with a CAG repeat of 41. Sadly, since starting this journey, other members of our family have also been diagnosed."
"I found the entire journey of looking after my great auntie incredibly challenging. What should have made the process easier was; adult social services, doctors, consultants, nurses, carers, nursing homes and care quality commission (CCQ). Unfortunately in my experience with my great auntie, 90% of these didn’t help. They actually made it worse and more stressful. Some refused to help or allowed her to self-neglect with others it was the unwillingness to learn what Huntington's disease was and how to look after her or point blank saying that they couldn't provide the care she needed. I was effectively ‘learning on the job’ and I was reaching out begging for help for my great auntie and got nowhere."
Did you use the Huntington's Disease Association for support?
"I learnt about the Huntington's Disease Association after a few years of looking after her. The Specialist Adviser for Cornwall was amazing. He ran sessions in the nursing homes to provide information on Huntington's disease and how best to help patients and he provided help with continuing healthcare (CHC). My great auntie wasn’t even given a Huntington's consultant or specialist Huntington's nurse due to non-compliance. Our adviser helped me to learn about the disease and give me advice at various stages when needed."
"When the first nursing home was not caring for my great auntie correctly, he tried to help so we wouldn’t have to move her. This is why I am fundraising for the Huntington's Disease Association and will continue to do so. I do not want other people to have to go through what my great auntie and myself went through. It really shouldn’t be that hard to get help for someone who so desperately needed it. I want to help raise awareness of Huntington's disease and help end the stigma attached to it. I want to help find a cure, more treatments and support for the individuals and the families and carers who have to watch their loved one decline and slip away from them. I want better for the people living with Huntington's disease. They deserve better."
Are you planning any more fundraising challenges?
"This year I am taking part in #HDHike again in May and my challenge this time is to walk 150 miles! This year I have two sidekicks joining me. Casper, my white miniature schnauzer will be joined by Cruella, my black and silver miniature schnauzer. Cruella was born the same week I had my blood test taken for Huntington's disease, and she joined our family the same week I received my test results, she is a true Huntington's hound to me."
"Casper and Cruella have helped me so much with getting out of the house even when I don’t want to. They give me a purpose to get out in nature and fresh air."
Thank you so much to Camilla for sharing your story with us and good luck in this year's #HDHike.
If this has inspired you to take part, you can find out more about how to register below.