The Hidden Gene: Alpha-1 Stories

Inside this volume

Fifty first-person accounts describe alpha-1 antitrypsin deficiency, an inherited condition that can affect the lungs, the liver or both. Many writers spent years labelled with asthma, COPD, bronchitis or a smoker's lungs; others were found through a brother's result, a grandchild's test, a cheek swab at the kitchen table, a baby who stayed yellow or painful lumps on the thighs. They include a hut warden in Dunedin, a lobster fisherman in Maine, a welder, a salon owner, a ship's engineer, a music teacher who sings alto, a respiratory nurse, identical twins with very different lungs, a carrier with healthy lungs and a nineteen-year-old asked whether he had come with his granddad, from Leicester to Cape Town and Turin to Tulsa. Writers describe weekly infusions and learning to put in their own needle, an insurance denial and appeal, pulmonary rehab, Nordic poles, oxygen tubing worn in public, lung valves, a clinical trial, a liver transplant and new lungs, pregnancy, quitting smoking, testing children and tracing twenty-three relatives in four countries. Not every account is settled: one man is still waiting for the phone to ring, the valves helped one woman only for a while, another writer has advanced emphysema, and one man found low mood the hardest part.

Who it's for

For anyone newly tested or carrying a single copy, people living with alpha-1 in their lungs or liver, and the parents, partners and relatives deciding whether to be tested.

Format · Instant download · PDF & EPUB · Fifty first-person accounts · PDF: 281 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.