Guest Post: Resource of a Rare Childhood Illness

Parents are always looking for more information about their child’s health diagnosis.  Navigating their way through the unfamiliar territory of treatment plans, medications, terminology and the drastic life alterations, can be overwhelming.

I am excited to introduce Betsy Miller, who provides families with information on a few children’s health conditions. She is the author of The Parents’ Guide to Clubfoot and The Parent’s Guide to Hip Dysplasia. She is currently in the process of publishing her latest book, The Parents’ Guide to Perthes, and would like to share what the book is about and her publishing efforts.

PGP_cover_sized2I’d like to talk about my latest book, which I co-authored with Dr. Charles T. Price.  Perthes is a rare childhood disease that affects the hip joint of children age 2 to 12 years.

Book Description

The Parents’ Guide to Perthes explains what happens when a child has Perthes. Illustrations and x-ray examples show the effects of Perthes in the hip joint for different children. This book covers how Perthes is diagnosed and progresses through stages, and how the age of the child at onset affects the course of the disease. Learn about the criteria that doctors consider to develop a treatment plan and read first-person accounts from parents and children about their Perthes experiences.

Author Bios

Charles T. Price, MD is a pediatric orthopedic surgeon at Arnold Palmer Hospital for Children and a Professor of Orthopedic Surgery at the University of Central Florida. He is the author of over 100 scientific publications including research papers and book chapters about Perthes. Dr. Price is a past President of the Pediatric Orthopedic Society of North America (POSNA), and received the Distinguished Achievement Award in 2011 for contributions to the advancement of orthopedic care for children.

Betsy Miller is the author of The Parents’ Guide to Hip Dysplasia and The Parents’ Guide to Clubfoot. She teamed up with Dr. Price to write The Parents’ Guide to Perthes to provide support and information to families of children with Perthes. Miller lives in California, where she writes for high-tech companies.

Journey to Publish

When Dr. Price and I decided to write this book, I checked in with my previous publisher. They expressed interest in publishing The Parents’ Guide to Perthes. That was great news, and Dr. Price and I got to work. We work together well, and the book began to take shape. Dr. Price covered the medical details and I joined Perthes parents groups and started to write about the challenges that families face at home after leaving the doctor’s office.

Then my publisher decided not to publish The Parents’ Guide to Perthes after all because Perthes is so rare. The number of potential readers is small, so the cost for them to publish the book would be more than the amount of money that book sales would generate.

Wait, not publish The Parents’ Guide to Perthes? Of course, each publisher decides what they want to publish. But I had already connected with parents who needed this book. Yes, Perthes is rare, but these parents need resources as much as anyone else. What about the mom whose son was facing hip surgery? What about the parents who struggled to understand what was going on inside their children’s hip joints? Dr. Price had already written such clear explanations. I had paid for professional illustrations to help parents visualize how the hip joint changes as Perthes progresses. We weren’t ready to abandon this project.

After some serious thought, I decided to publish The Parents’ Guide to Perthes independently. Together with a few other people, I formed a new publishing company called Thinking Ink Press to publish this book and others.

To help cover the publishing expenses, I’m running a crowdfunding and preordering event. I hope I can raise enough.

If you’d like support The Parents’ Guide to Perthes, visit: www.perthes.pubslush.com

Spreading the word helps too! You can share this post or this link: www.perthes.pubslush.com

I like to stay in touch with parents and find out what their needs are, so feel free to contact me about other health topics as well. There’s always the next book, right? I look forward to hearing from you.

Betsy_Miller_headshot

Betsy Miller

Feel free to reach out:

betsy@thinkinginkpress.com

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One response to “Guest Post: Resource of a Rare Childhood Illness

  1. Pingback: Get Inspired by CRUTCH | Child Life Mommy·

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