Living with Addison's Disease
A Guide for People with Addison’s, Supporters and Professionals
This is a practical and evidence-based guide co-authored by Professor Simon Pearce, a leading endocrinologist, and patient advocate Sarah Spain. Written to address the need for reliable, accessible information about Addison’s disease, the book combines expert medical knowledge with real-world advice from lived experience, helping readers not only manage the condition safely but also live well with it. Covering topics such as diagnosis, medication, sick-day rules, adrenal crisis prevention, travel, pregnancy, exercise and quality of life, the book was created as a comprehensive resource for patients, families and healthcare professionals alike.
Recognised with a Commended award at the 2019 British Medical Association Patient Information Awards, it remains an important reference for the Addison’s community and reflects the authors’ shared commitment to improving understanding, treatment and day-to-day management of the condition.
The authors are currently working on a second edition to bring the information up-to-date, and to reflect the needs of those with secondary and tertiary adrenal insufficiency, alongside Addison's disease.
Be Patient, by Tilly Rose
Be Patient is Tilly Rose’s first memoir, written to shine a light on the realities of life as a patient navigating chronic illness and adrenal insufficiency.
Drawing on more than 20 years of personal experience, Tilly recounts her long search for answers, the challenges of living with undiagnosed adrenal insufficiency, and the events leading up to her first adrenal crisis. Inspired by the response she received after sharing her story on Instagram, she wrote the book to give a voice to patients who often feel unheard, misunderstood, or overlooked within healthcare systems.
Told with warmth, humour and honesty, Be Patient combines moving personal storytelling with a powerful message about patient advocacy, raising awareness of adrenal insufficiency and the importance of improving understanding and care for people living with rare and complex conditions.
Read our blog article about Tilly and the back-story to 'Be Patient'
Second Chances
The Stories of Living with Addison's Disease, edited by Carol McKay
In 2012, soon after her diagnosis in 2010, and having started to adjust, Carol McKay put out an appeal for personal stories of people around the world who have Addison’s, and soon was able to publish an e-book called Second Chances: true stories of living with Addison’s Disease.
It was featured on the BBC World Service Radio programme Health Check in February 2013 and sold quite well for such a niche market as ours. That meant I was able to make a token payment to the contributors and give something to the ADSHG, but most important was reading the reviews, and realising this sharing of our stories had really helped people.
White Spirit, by Carol McKay
White Spirit is a crime novel by author Carol McKay, written to raise awareness of Addison’s disease through engaging, mainstream fiction. Set in the Scottish Highlands, the story follows DI Allan MacIntyre as he investigates a murder while struggling with unexplained health problems that ultimately lead to a diagnosis of Addison’s disease. Inspired by her own near-fatal diagnosis in 2010 and her desire to see Addison’s represented more accurately in literature, McKay created the novel to help readers understand the condition through the experiences of a compelling and relatable character. Combining a fast-paced detective story with authentic insights into living with Addison’s, White Spirit aims to increase public awareness, challenge misconceptions, and support the Addison’s Disease Self-Help Group, to which McKay donates her author royalties