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Strength: Lives Touched by Cystinosis
Cystinosis.
It’s a word that most people have never heard. There’s a good chance that whoever is reading this right now, has no idea what it is. Cystinosis is a rare genetic, metabolic condition. Not many people have this condition but it has touched more lives than one might think. The ones who have this condition, their family, their friends, the doctors who treat them. Its affects are not intangible.
In this collection you will find pieces written by the people who have been affected by cystinosis in one way or another. You don’t need to have cystinosis to appreciate this collection. You don’t even have to know someone who does. These true stories are meant for everyone. Everyone who has ever experienced the great pains and joys of life. We hope that this book will shed light on a rare and little known condition and touch your life just as cystinosis has touched ours.
All proceeds donated to the Cystinosis Research Network. Tentatively slated for release in July 2017.
It’s a word that most people have never heard. There’s a good chance that whoever is reading this right now, has no idea what it is. Cystinosis is a rare genetic, metabolic condition. Not many people have this condition but it has touched more lives than one might think. The ones who have this condition, their family, their friends, the doctors who treat them. Its affects are not intangible.
In this collection you will find pieces written by the people who have been affected by cystinosis in one way or another. You don’t need to have cystinosis to appreciate this collection. You don’t even have to know someone who does. These true stories are meant for everyone. Everyone who has ever experienced the great pains and joys of life. We hope that this book will shed light on a rare and little known condition and touch your life just as cystinosis has touched ours.
All proceeds donated to the Cystinosis Research Network. Tentatively slated for release in July 2017.
Unknown Binding
Published July 1, 2017
41 people want to read
About the author
Amanda Leigh
24 books206 followersAmanda Leigh is the multi-genre author of numerous titles, including the Mature YA Paranormal Romance, the Beauty of the Dark series. She’s made up stories all her life, and written them down since she was eight. In college she got her degree in English and Communications, and worked as the Assistant Managing Editor on the literary magazine. Amanda advocates for mental health, cystinosis/rare disease awareness, and literacy. Strength: Lives Touched by Cystinosis is an anthology to raise awareness and money for cystinosis. She has a cat she adores and loves cooking, music, art, Psychology, Marvel, Harry Potter, and Elvis Presley. Not necessarily in that order. Find her online at www.authoramandaleigh.com and feel free to get in touch with her.
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Newsletter: http://tinyurl.com/j96zclw
Blog: http://girlwithapenandadream.blogspot...
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Facebook: https://www.facebook.com/AuthorAmanda...
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Displaying 1 - 2 of 2 reviews
November 27, 2017
This book was a labor of love and a long time coming. I'm so proud that Amanda Buck and I (and many others) were able to bring this to fruition.
While many of the stories of cystinosis patients and their families have similarities one of the things I love most about this is how varied the stories are. It shows that we (those affected by this condition in one way or another) are human beings, with different views and experiences. Our own life stories. We are not just lab rats, specimens. Although occasionally we may feel like it. Cystinosis may be part of us but it does not define us. The stories in this book weave a lovely yet honest tapestry of some of the lives affected by this rare condition. All of the stories took a different approach and brought something different to the table. Just like our small but strong community.
Something else I love is the art section of this book. Such different entries and from so many places all over the world!! It's amazing to see. I hope that those book reaches the hands of not only those with and affected by cystinosis but those without, as well. I believe everyone can gain something from this book. I hope it spreads awareness, as well.
I hope if you read this you find insight and even some comfort in the stories of others. I commend the bravery of those who have contributed and thank you from the bottom of my heart. I truly hope that you pick up this book.
We are hoping to one day soon have this available in e-book form, as well.
All proceeds go to the Cystinosis Research Network.
While many of the stories of cystinosis patients and their families have similarities one of the things I love most about this is how varied the stories are. It shows that we (those affected by this condition in one way or another) are human beings, with different views and experiences. Our own life stories. We are not just lab rats, specimens. Although occasionally we may feel like it. Cystinosis may be part of us but it does not define us. The stories in this book weave a lovely yet honest tapestry of some of the lives affected by this rare condition. All of the stories took a different approach and brought something different to the table. Just like our small but strong community.
Something else I love is the art section of this book. Such different entries and from so many places all over the world!! It's amazing to see. I hope that those book reaches the hands of not only those with and affected by cystinosis but those without, as well. I believe everyone can gain something from this book. I hope it spreads awareness, as well.
I hope if you read this you find insight and even some comfort in the stories of others. I commend the bravery of those who have contributed and thank you from the bottom of my heart. I truly hope that you pick up this book.
We are hoping to one day soon have this available in e-book form, as well.
All proceeds go to the Cystinosis Research Network.
July 28, 2017
*biased review as my poetry is included in this anthology*
I love all the different perspectives of living with rare disease written within these pages whether it's in the writer's body, in a sibling, in a daughter or son, in a granddaughter or grandson, in a niece or nephew, or in a patient. Beautiful.
I love all the different perspectives of living with rare disease written within these pages whether it's in the writer's body, in a sibling, in a daughter or son, in a granddaughter or grandson, in a niece or nephew, or in a patient. Beautiful.
Displaying 1 - 2 of 2 reviews