Rare Disease Stories
TOLD BY THE PEOPLE WHO LIVE THEM
Rare Disease Stories
TOLD BY THE PEOPLE WHO LIVE THEM
TOLD BY THE PEOPLE WHO LIVE THEM
Kaleidoscope: Rare Disease Stories is a collection of true, first-person stories from people around the world living with a variety of rare diseases. The writers in this book, like the rare diseases they live with, span all ages, ethnicities, genders, religions, and ability levels.
Each story shares an aspect of their experience: the journey to diagnosis, what they've learned, how they've grown, changed, and connected with others in the rare community, how they embrace life, and more. These rare warriors show strength, courage, creativity, humor, and so much more. They are living proof that even through the darkest of times, through the unthinkable, through the fear - there is always hope.
Featuring:
- 60 Stories
- 44 Patient Writers
- 3 Caregiver Writers
- 59 Rare Diseases
- 4 Countries
- Ages 2 - 76
With a foreword by Karen Duffy Lambros, NY Times best-selling author of Model Patient, Backbone, and Wise Up, who lives with neurosarcoidosis.
Read the reviews!
⭐⭐⭐⭐⭐ 5.0 out of 5 stars Great for patients and medical professionals
I bought several copies so I could give them to my healthcare team. I gave it to a case manager today who immediately said, “This will teach me so much!” She recognized that there are many rare diseases she hasn’t even heard of yet but might encounter someday. This is exactly why I bought the extra copies! This book is an invaluable resource for those of us living with rare diseases, and it’s also an amazing tool to better equip the medical community to empathize with their patients and provide them with the highest quality care.
⭐⭐⭐⭐⭐ 5.0 out of 5 stars Great Book - Makes You Feel Less Alone!
Reading through the stories of others shows how even though rare diseases can be so different, the experiences of living with one can have so many similarities. Seeing into the lives of others who also struggle with rare diseases makes you feel less alone and shows you that you are part of a much larger community of people who are all doing their best to get the most out of life, despite many trials and difficulties. I am so grateful that these stories were compiled to share with the world!
⭐⭐⭐⭐⭐ 5.0 out of 5 stars A beautiful collection of stories
Such an amazing collection of stories from people living with rare diseases. Kerry Wong's writing is full of heart and emotion. The other authors in this book share stories of life with rare diseases. I learned a lot, I teared up a few times, and I am sharing it with my doctor. Thank you Kerry for sharing the Rare Patient communities voice in such an amazing way
Read more reviews on Amazon
Order your Kaleidoscope today!
Available in e-book, paperback, and hardcover editions.
*Net proceeds donated to the National Organization for Rare Disorders (NORD).
Next up in the series:
Kaleidoscope: Invisible Illness Stories
Do you have an invisible illness? Want to share your story? I'll be collecting stories towards the end of the year. Stay tuned or follow me on Bluesky or LinkedIn for details.
