IT'S MY LIFE
'For centuries patients have been passive- but not anymore. It's their body, it's their life. They don't want to lie down any longer. They want to get into the driver's seat. They want to get involved in the process of decision making. About their medicines, about their treatments, about their bodies, about their lives.
This book portrays a revolution that is taking place now. Well-known Dutch science-writer Simon Rozendaal interviewed twelve patients with rare hereditary diseases from all over the world. Their stories show a determination to take charge, to make a real difference.
The Bulgarian biologist who has established a European science-network to address the rare disease of her daughter, the American businessman who founded new companies to address his children's disease, the Irishman frustrated by conservative views on stem cells because he desperately needs new treatments, the Dutch woman with a hereditary disorder and sitting in a wheelchair, they all embody a new energy with the promise to change medical science, the pharmaceutical industry and health care: Patient Power, the heir to Womens Power, Black Power and Gay Power'