Well-Being in Rare Diseases.

A Practical Guide

Julia Gleize, James A. Levine

• Publisher: Fondation Ipsen Press
• Year: 2026
• eBook ISBN:
  9782384273492
• Topic: Medicine
• Subtopic: Alternative & Complementary Medicine

Living with a rare disease is not only a medical experience—it is a human one. It reaches into every part of life: the body that struggles, the mind that questions, the family that hopes, and the community that rallies. This book began with that truth and has followed it through the many ways people find comfort, meaning, and strength when medicine alone is not enough.

Across these chapters we have explored how complementary practices—mindfulness, yoga, art, touch, and reflection—can restore balance and dignity. We have met caregivers who hold entire households together, and patients who, despite pain and uncertainty, continue to build lives that are creative, purposeful, and full of courage.

The message is simple but profound: well-being is not a luxury or an afterthought. It is part of treatment itself. Every breath of calm, every shared laugh, every moment of understanding between a patient and a caregiver is an act of healing.

ABOUT THE AUTHOR

A graduate of Cambridge, James A. Levine became a physician by vocation and a writer almost by accident. He is a professor of medicine at the renowned Mayo Clinic in Minnesota, where he lives with his wife and their daughters.

It was during a visit to the repugnant Rue des Cages in the Komatipura district of Bombay—where, under dramatic conditions, some of the 1.2 million children prostituted in India are forced to work—that James A. Levine saw a fifteen-year-old girl in a pink sari writing in a blue notebook. From this encounter came "The Blue Notebook", a powerful and unsettling first novel about child prostitution, the new slaves of the twenty-first century.

The royalties from sales of The Blue Notebook are donated to the International Centre for Missing and Exploited Children.

It was while traveling through emerging countries on behalf of the United Nations that the idea came to him to bear witness to the conditions in which his future heroes grow up and live.

If you want a more literary tone—or a tighter, back-cover version—I can tweak the style.

Table of contents

• Cover
• Title
• Contents
• Foreword
• Foundations of Complementary Care in Rare Diseases
• Pathways to Well-Being: Evidence-Based Complementary Practices
• The Human Circle of Care: Supporting Caregivers and Families
• References