Published in 2025, “The Stories That Took Years to Be Written” includes the story of ORDA’s founder and her journey with scleroderma. Her page from the book is below.
In 2025 the Scleroderma International Organization published “The Stories That Took Years to Be Written”, a collection of journeys from people around the world living with scleroderma — stories of strength, struggle and resilience that comfort those on the same path and raise awareness among those who want to understand. Story #11, on page 24, is that of ORDA’s founder and president, Aydah Saad Abu Eliem. ISBN: 978-1-257-86080-7.
Her page from the book is shown above. In short: diagnosed with scleroderma in her mid-thirties, she faced lung fibrosis, chemotherapy and years of isolation, then found a new way of living that combines treatment with breathing exercises, physiotherapy, healthy eating, stress management and mental-health support. Meeting a woman diagnosed at the same time, who was now in a wheelchair, led her to found ORDA so that no one with a rare disease feels as hopeless and alone as she once did.