Читать книгу Ungalahli Ithemba - Sonja Böckmann - Страница 5

Prologue

Rare diseases are rare.

While this may sound trite, it is descriptive of what´s at the very core of the struggles of many patients. Patients who have had to embark on an odyssey of doctors and therapists for many years. Patients who, even from the people who are closest to them, are met with a lack of understanding; patients who doubt themselves.

The phenomena that accompany one of these rare diseases are presented in this book in a candid and moving fashion. The reader gets to experience the highs and lows, the reactions of those affected, their families, their close personal circles and the reactions of the “official" players up close and personal. Many patients will recognize themselves and their own becoming in the context of their disease — this book will help you understand it.

In the hope of improving the situation of patients with rare conditions,

Prof. Dr. med. Uwe Max Mauer

Head of the Department of Neurosurgery?

Armed Forces Hospital Ulm