the essential
“Smith Magenis Syndrome or the flame of an inextinguishable maternal love”, a testimony on the wandering of the diagnosis and on the fight against orphan diseases.
Karima Benaboura presents her work entitled “Smith Magenis Syndrome or the flame of an inextinguishable maternal love”, a poignant book which traces the personal and emotional struggle of a mother in the face of medical uncertainty and the absence of a diagnosis for her daughter’s orphan illness. “This book is intended for all families faced with medical uncertainty. Diagnostic wandering is a reality for thousands of families. When a child’s health is at stake and no medical answer is found, the daily life of parents becomes a long quest for explanations and solutions”, explains the author who, through this sincere and moving testimony, shares her personal journey, from the appearance of the first symptoms to the late recognition of a rare disease. “This book is not only a story of a struggle against the unknown, it is also a guide and a source of hope for families going through similar experiences. It offers a testimony on emotional trials: how overcome anxiety and loneliness when there is no diagnosis? But also reflections on cultivating resilience: the importance of maintaining hope despite uncertainties Also, a call for awareness: the work invites professionals. health to recognize and understand wandering diagnostic to improve the care of patients and their families,” adds Karima.
About the author
Karima Benaboura is the mother of a child affected by a rare disease. Through this personal testimony, she highlights the difficulties encountered by families in their quest for diagnosis and campaigns for a better understanding of rare diseases. She is also involved in several associations supporting families and raising awareness of orphan diseases. By publishing this book, she wishes not only to share her experience but also to offer tangible support to other parents and loved ones faced with diagnostic wandering. “Smith Magenis Syndrome or the flame of unquenchable maternal love” offers resources, practical advice and ways to better navigate the twists and turns of the health system.
