“For me, the best thing about the Huntington’s Disease Association advisors is knowing you’re not on your own,”
We spoke to Camilla, who has used our Specialist Huntington’s Disease Advisory service. She added: “Huntington’s is a rare genetic disease and no one’s really heard of it, unless they’ve got it in their family. You can really feel alone. So it’s been amazing to bounce ideas off the Specialist Advisers and to know I’m supported.”
Camilla received a diagnosis of Huntington’s in 2022, but only discovered the disease ran in her family in 2017. Her great auntie Lonnie had become reclusive and was no longer caring for herself properly. Camilla battled with doctors and social services to get Lonnie the right support and finally an Approved Mental Health Professional gave a diagnosis of four possible conditions. One was
Huntington’s disease.
“At first, I thought Lonnie couldn’t have Huntington’s because there was no family history of the disease,” says Camilla. “But when I looked it up, I discovered symptoms that matched her behaviour. And eventually, Lonnie did receive a diagnosis of Huntington’s disease.”
Camilla was devastated by the news. “I freaked myself out,” she says. “My kids were only four and six at the time. If I’d known there was Huntington’s in my family, I’d never have had children without being tested.”
Camilla contacted the Huntington’s Disease Association and was put in touch with Charles, one of our Specialist Advisers. “He was my saviour,” says Camilla. Charles helped her find an appropriate care home for Lonnie and even delivered training on Huntington’s to the care home staff.
Supported by Charles, Camilla decided to talk openly to her children about the disease.
“Since they were young, they’ve heard about Huntington’s, so it’s not a scary word for them. And now they’re teenagers, both my kids engage with Jack, the local Huntington’s Disease Association Youth Worker. It helps them to know there are other young people in the same position.”
Following Charles’ retirement, Justine took over as our Specialist Adviser for the South West.
“Justine is lovely,” says Camilla. “She’s spoken to me over the phone and helped me set up an event for families with Huntington’s. I’ve also attended coffee meetings locally and on Zoom.”
Camilla is passionate about raising awareness of Huntington’s and has taken part in the #HDHike, walking 100 miles in a month to fundraise for us. She told us,