Chloe wants to use her voice to help others feel less alone and see what support is available.

“Huntington’s Disease is such a rare condition that it can feel as though you’re the only person in the world who’s dealing with it,” says Chloe, who’s in her 20s and works in the NHS.

As a child, Chloe’s understanding of Huntington’s Disease was extremely limited. “I knew that my grandad had died of the condition when he was only 44,” she says. “But I didn’t know that the disease was genetic or that you could be tested for it.”

During her teens, Chloe learned that Huntington’s disease was genetic, but was reassured by her family that the gene hadn’t been passed on. At this point, no tests had been done.

While she was at university, Chloe discovered that without a genetic test, you couldn’t be certain that you didn’t carry the gene. This led her to realise that she was at risk of developing the disease herself. “It was a big shock. My mind went into a spiral, not just worrying about my own health and future, but also what it might mean for my closest relatives.”

Chloe found details of the Huntington’s Disease Association online, but it took her three years before she was ready to contact them. Eventually, encouraged by a colleague, she sent the charity an email. Someone got back to her the next day and, within a week, she had her first call with James, a Youth Worker.

I was really nervous before I talked to James, but he was so friendly. It was the biggest relief just talking to someone who understood my situation, gave me factual information and reassurance, and validated my feelings.

James gave Chloe emotional support as they discussed the possibility of her taking a test to discover whether she had the faulty gene that causes the condition. “I was at risk of having Huntington’s, but it took me over a year to decide to take the test,” she says. “I tested negative, so I won’t go on to develop the disease, but I know that members of my family are still at risk.”

Inspired by the support she’d received, Chloe was keen to use her experience to benefit other young people. She helped set up the HD Youth Voice group and became a Trustee on the Huntington’s Disease Association board. 

Chloe has also talked at a parliamentary event to raise awareness about Huntington’s Disease. “It was a big step to speak on behalf of the charity,” says Chloe. “I’m quite a quiet person, so I feel really honoured to have been asked to talk to MPs.”

“Now I encourage everyone affected by the disease to reach out for support to the Huntington’s Disease Association. You’re not alone and there’s such a lovely, genuine, friendly community of people here. As young people, we can have a huge impact on how the next generation deals with this condition. By speaking up, we have the potential to change lives.

Thank you to Chloe for sharing your story with us.