One in 10 people will go to the hospital this year. Yet we receive no training for how to be a patient or how to navigate the professional medical world. The book How are You? Manage Your Own Medical Journey empowers the reader to be informed, proactive, and at peace with a serious medical crisis. The fascinating role and complex issues of genetics, life with a chronic illness and relationships are described in an honest, thought-provoking account of one woman's journey with von Hippel-Lindau disease.

Ms. Foote tells her own story in a very moving way. Based on her personal experience with VHL, she provides guidelines for people with any chronic or rare disease -- strong lessons in being a savvy consumer. Any serious illness deeply shakes our sense of self, and indeed the meaning of life. She shares her journey from diagnosis through multiple procedures to the new reality of living -- yes, happily! -- with a chronic illness. After reading this book, you may never use the question, 'How are you?' in the same casual way again.

"This book is a milestone in the arena of self-help and patient advocacy," says Dr. William Kintner of the Pacific Southwest Regional Genetics Network. "It is a wellness handbook for every person."

"Rare diseases are often the last to receive attention and funding on scientific levels, and even less likely to focus on survivorship issues. This book offers a beacon of hope to people living with von Hippel-Lindau (VHL) or other rare diseases as it shines light on an often misunderstood disorder. By sharing an intensely personal journey, the author offers information and inspiration that will no doubt decrease the suffering of other survivors," says Susan Leigh, R.N., Past President of the National Coalition for Cancer Survivorship.

A series of "How to" sections offer practical advice:
How to find a good general practitioner
How to deal with a serious diagnosis
How to get ready for hospital
How to make those first steps towards recovery
How to find a specialist
How to deal with medical incompetence
How a patient can help relationships
How to be a caring caregiver
How to locate a support group
How to locate a genetic counselor
Questions you may have for your Genetic Specialist
How to evaluate a health insurance company
How to accept the new reality of life after a serious illness (How to live life with a chronic disease)
How to find clinical trials

The author is donating to VHLFA $5 of every book sold through this website.

As printed in the VHL Family Forum 6:3, September 1998. For permission to reprint, please contact VHL Family Alliance, info@vhl.org.