A reading list for Chronic Disease Awareness Day

Books on long Covid, crowdfunding healthcare, Alzheimer’s, and more

On this Chronic Disease Awareness Day, we’re raising awareness of the challenges faced by millions living with chronic illness—from the diseases themselves to the broader issues with the healthcare system that impact their well-being. Read on to discover books on these topics and more from the Press, and sign up for our newsletter to receive more updates on our work.

Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care by Susannah Fox

Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? In Rebel Health, Susannah Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the health care system to offer a way forward. Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health.

The Long Haul: How Long Covid Survivors Are Revolutionizing Health Care by Ryan Prior

To the world’s public health authorities, Covid-19 would be either a deadly disease for some or a simple respiratory illness for most, its symptoms clearing up in just a matter of weeks. But then tens of millions around the world got sick and stayed sick. With scientists and doctors caught off guard, these Long Covid patients often found solace only with one another, organizing support groups across oceans and continents while ill in bed. In The Long Haul, CNN journalist Ryan Prior weaves his own life, the stories of activist patients, and the latest science into a captivating tale of regular people crying out for care that actually works.

Crowded Out: The True Costs of Crowdfunding Healthcare by Nora Kenworthy

Over the past decade, charitable crowdfunding has exploded in popularity across the globe. Sites such as GoFundMe, which now boasts a “global community of over 100 million” users, have transformed the ways we seek and offer help. When faced with crises—especially medical ones—Americans are turning to online platforms that promise to connect them to the charity of the crowd. What does this new phenomenon reveal about the changing ways we seek and provide healthcare? In Crowded Out, Nora Kenworthy examines how charitable crowdfunding so quickly overtook public life, where it is taking us, and who gets left behind by this new platformed economy.

The Day After Yesterday

The Day after Yesterday: Resilience in the Face of Dementia by Joe Wallace

A graphic designer, a writer, a public servant, a retired PhD, a 29-year-old with early-onset Alzheimer’s. These are just some of the 50 million people living with dementia who share their deeply personal stories with Joe Wallace in The Day after Yesterday, a powerful collection of portraits and personal stories that humanizes the millions of people living with the disease. Each story in this poignant volume offers a unique and powerful lesson—not just about how to live with a terminal illness, but how to do so with resilience and dignity.

When Blood Breaks Down: Life Lessons from Leukemia by Mikkael A. Sekeres

When you are told that you have leukemia, your world stops. Your brain can’t function. You are asked to make decisions about treatment almost immediately, when you are not in your right mind. And yet you pull yourself together and start asking questions. Beside you is your doctor, whose job it is to solve the awful puzzle of bone marrow gone wrong. The two of you are in it together. In When Blood Breaks Down, Mikkael Sekeres, a leading cancer specialist, takes readers on the journey that patient and doctor travel together.

The Ghost in the Addict by Shepard Siegel

“The dead drug leaves a ghost behind. At certain hours it haunts the house,” Jean Cocteau once wrote. In The Ghost in the Addict, Shepard Siegel offers a Pavlovian analysis of drug use. Chronic drug use, he explains, conditions users to have an anticipatory homeostatic correction, which protects the addict from overdose. This drug-preparatory response, elicited by drug-paired cues, is often mislabeled a “withdrawal response.” The withdrawal response, however, is not due to the baneful effects of previous drug administrations; rather, it is due to the body’s preparation for the next drug administration—a preparatory response that can haunt addicts like a ghost long after they have conquered their usage.

How Not to Study a Disease: The Story of Alzheimer’s by Karl Herrup

For decades, some of our best and brightest medical scientists have dedicated themselves to finding a cure for Alzheimer’s disease. What happened? Where is the cure? The biggest breakthroughs occurred twenty-five years ago, with little progress since. In How Not to Study a Disease, neurobiologist Karl Herrup explains why the Alzheimer’s discoveries of the 1990s didn’t bear fruit and maps a direction for future research. Herrup describes the research, explains what’s taking so long, and offers an approach for resetting future research.

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