Positively Rare: Empowering Stories from the Rare Disease Community (Lemonade Life Series)

Paterson, Erin; DeFabio, Daniel; Boulavsky, Erika; Nicol-Wilson, Dunstan; Koller, Tessa; Jones, Jenny; Gillentine, Maddie; Will, Laura; Cueva, Jen

ISBN 10: 1777917948 / ISBN 13: 9781777917944

Edité par Lemonade Press Inc., 2024

A propos de cet article

N° de réf. du vendeur 1777917948-3-36619972

Détails bibliographiques

• Titre: Positively Rare: Empowering Stories from the Rare Disease Community (Lemonade Life Series)
• Éditeur: Lemonade Press Inc.
• Date de parution: 2024
• Langue: anglais
• ISBN à 10 chiffres: 1777917948
• ISBN à 13 chiffres: 9781777917944
• Reliure: paperback
• État de l'article: Good

A propos de ce titre

Synopsis

This book is not just about rare diseases; it’s about finding purpose, strength, and love in life’s most challenging moments. An inspiring and life-changing read that gives voice to the often unheard.
Rob Haselberg, Huntington’s disease gene carrier and rare disease advocate

Positively Rare is an essential read for anyone seeking to broaden their perspective of living with a rare condition or yearning to feel less alone if struggling with one.
Melissa Adams, host of the I Am Not My Pain podcast and chronic pain fighter

A must-read guide for people with rare illnesses and a master class in empathy for caregivers, friends, family, and medical professionals.
Dr. Tamara Maiuri, Huntington’s disease researcher and published author in Huntington’s Disease Heroes

This book is a testament to the courage of patients and the ongoing search for solutions in an increasingly complex health care landscape.
Dr. Cornelia Griggs, pediatric surgeon and assistant professor of surgery at Harvard Medical School and author of the bestseller The Sky Was Falling

About the book:

Many people from the rare disease community have experienced medical gaslighting and toxic positivity, often leaving them feeling isolated, alone, and misunderstood. Positively Rare amplifies the collective voice of the rare disease community and helps eliminate the stigma and fear of living with a rare disease.

The stories in Positively Rare are written by people from the community in their own voices:

When a nurse is rushed to the hospital, she suddenly finds herself in an unexpected position: as a patient. After being diagnosed with a rare disease, she has to come to terms with being the one who is cared for.

Every time a man with sickle cell anemia experiences a pain crisis, he needs to decide whether he wants to risk going to the hospital and being mistreated again or endure the flare, which could last for days, at home.

When a mother’s newborn baby is diagnosed with a rare disease, she is immediately confronted by her own ableist view about the value of his life. As he grows, she takes on the challenge of advocating for him and learning the true gifts of parenting a child with a rare disease.

Through their impactful stories of triumph in the face of adversity, these rare disease authors teach us that WE ARE SO MUCH MORE THAN OUR RARE DISEASE.

50% of the profits from the sale of this book will be donated to Global Genes to support rare disease research and advocacy.

With inspiring stories from:
Adrienne Shirk, Andy Sinclair, Courtney Wells, Daniel DeFabio, Dunstan Nicol-Wilson, Erin Paterson, Erika Boulavsky, Halsey Blocher, Hannah Remillard, Heather Halsey Dye, Jen Cueva, Jenny Jones, Joanne Paquette, Jocelyn Wong, Joe Kammers, Kelly Kearley, Kerri Mauer, Kimi Sorensen, Laura Will, Maddie Gillentine, Melissa Ryant, and Tessa Koller