A new novel set in the 1960s is helping to raise awareness of the complex and hidden realities of Huntington’s disease.

The story follows Bella Greig, a young woman pursuing her dream of becoming a pop star, while her family lives under the shadow of a devastating inherited condition. Through themes of secrecy, stigma and the fear of passing on the gene, the book reflects challenges many families affected by Huntington’s disease continue to face.

Huntington’s disease is a hereditary disorder of the brain caused by a faulty gene in your DNA. Each child of a parent with the gene has a 50% chance of inheriting it. Despite its life-changing impact, public understanding of the condition remains limited.

Lesley Bootiman, the author of the book, first heard about Huntington’s when working as a journalist; she got in touch with us to check the content related to Huntington's disease.

After reading the book Cath Stanley, Chief Executive Huntington’s Disease Association, said,

“This book, without being sensational, captures many of the issues families face as well as the secrecy that can shroud the illness.”

Raising awareness through literature and media helps improve understanding and reduce stigma. Greater public awareness is vital to ensuring that individuals and families affected by Huntington’s disease receive the support they need. We thank Lesley for highlighting Huntington’s disease and acknowledging the work of the Huntington’s Disease Association in England and Wales. 

If you are affected by Huntington’s disease and would like advice or support, our Specialist Advisers are here to help. Call the helpline on 0151 331 5444.

Or visit the Support near you page on the website.

The book Gifts by Lesley Bootiman is available to buy in bookshops or online.