This is axcellent compilation of stories from real people in the Rare Disease Community. Reaing their stories is a great way to gain a rich understanding of the burden of living with a chronic illness. The authro/editor does a great job at selecting the right stories to get the full picture out there.
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About the author
Thrilled to share my story about living with a rare disease.
This book is exceptional. Author, Kerry Wong is phenomenal! She captures powerful stories and emotions of all of the writers who describe what it’s like living with a rare disease. So many incredible stories all in one book. I have wanted to share my story about what it’s like living with Addison’s disease since childhood and how difficult it was to learn to survive when doctors had no idea how to diagnose or treat it. I had to learn to adapt to a new way of living. Many times, teaching my providers about my disease. I am so thankful that Kerry gave me this opportunity and I hope my stories will inspire others to feel confident to share their experiences and rare diseases. I hope this book will empower others to know that they are not alone in their journey. This book is so important. My friends and family have all purchased copies. I know I have learned so much from the writers in this book! Thank you Kerry Wong!
Top reviews from the United States
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- Reviewed in the United States on November 7, 2024
- Reviewed in the United States on June 17, 2024
This book is exceptional. Author, Kerry Wong is phenomenal! She captures powerful stories and emotions of all of the writers who describe what it’s like living with a rare disease. So many incredible stories all in one book. I have wanted to share my story about what it’s like living with Addison’s disease since childhood and how difficult it was to learn to survive when doctors had no idea how to diagnose or treat it. I had to learn to adapt to a new way of living. Many times, teaching my providers about my disease. I am so thankful that Kerry gave me this opportunity and I hope my stories will inspire others to feel confident to share their experiences and rare diseases. I hope this book will empower others to know that they are not alone in their journey. This book is so important. My friends and family have all purchased copies. I know I have learned so much from the writers in this book! Thank you Kerry Wong!
Thrilled to share my story about living with a rare disease.
Reviewed in the United States on June 17, 2024
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- Reviewed in the United States on April 10, 2024
- Reviewed in the United States on March 7, 2024
- Reviewed in the United States on March 12, 2024
What an exceptional book created by the fabulous Kerry Wong! I'm honored that I had the opportunity to share a tiny glimpse of my life with my rare disease, PH! I'm inspired and hopeful as I read stories from many other RD warriors in this book! It was a coincidence that I was in the hospital during Rare Disease Day. But I'm grateful my copy of the book arrived at my living and supportive hubby, also my caregiver, brought it to me at the hospital! Thanks for giving me a reason to smile during a traumatic hospitalization.
Friends, family, healthcare providers, politicians, and everyone can learn something from reading this book. What a phenomenal eye-opening! Kerry, you, my girl, are an inspiration!
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- Reviewed in the United States on March 7, 2024
You don't realize how people feel that are battling with a rare disease. In this book they are sharing everyday thoughts from those warriors, struggling to make it through each day.
Did you know there are over 10,000 rare diseases. 1 of 2 Patients that are Diagnosed with a Rare Disease is a Child.1 in 10 People are Affected by Rare Disease. 3 of 10 Children with a Rare Disease Won’t Live to See Their 5th Birthday. 95% of Rare Diseases Lack an FDA Approved Treatment. 400 Million People Suffer From a Rare Disease Globally.
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