Living with the Gene: Huntington's Disease Family Stories

Inside this volume

Fifty first-person accounts describe life in families with Huntington's disease. Some writers learned the name after years of dropped cups, sudden temper and a bus driver lost on his own route; one found out from a DNA kit bought as a joke, another from a Google search at fifteen. They include gene-positive people, people at risk who chose not to test, a sister who tested clear and felt no simple relief, spouses, children, a grandson and a former wife, from Glasgow and Cork to Bengaluru, Nairobi and rural Montana. Jobs run from joiner and bus driver to speech therapist, site manager and gym teacher. The stories take in IVF with embryo testing, adoption, a decision at twelve weeks, a feeding-tube conversation in a hospital corridor, a research study, a specialist clinic and a Thursday night support group. Daily life shows up in safer bathrooms, softened meals, insurance calls, a police stop where a husband was thought to be drunk, and a village that called the illness a curse. Two writers describe children with the juvenile form. Not every outcome is gentle: there are deaths, a care home that did not understand a resident, a winter of wanting to die, and a father who lost money to a remedy sold to desperate families. Humour, routine and company run throughout.

Who it's for

For people who carry the gene or are at risk, and for the partners, children, siblings and carers who live alongside Huntington's disease and want to hear from families who have stood there.

Format · Instant download · PDF & EPUB · Fifty first-person accounts · PDF: 245 pages

A collection of personal testimony, offered as companion reading — not medical advice.

• 50 single-author testimonies from real people
• A short, plain-language introduction to the topic
• Editor's note, contents page, and curated resource list
• Professional interior typesetting and an original cover

Every purchase includes a print-quality PDF (best for desktop, tablet, and printing) and a reflowable EPUB (best for Kindle, Apple Books, Kobo, and phones). Files are DRM-free. You can download both instantly from the order-confirmation screen, and we email them to your inbox as well, so your books are always within reach.