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:

Spreading the word helps too! You can share this post or this link:

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

Feel free to reach out:



Related Articles:

Stars in the Sand: Child Life Resource


How a Rare Disease Changed My Life


May 20th is Behcet’s Disease Awareness Day.

This disease has been part of my life since I was a child. I can still place myself in that little seven-year old girl’s body, kneeling on my legs at the landing of our staircase. I was sitting close with my nine-year old brother and watching my parents try to find the words to explain the drastic change to our family. My mom finally had a diagnosis after going through many medical procedures and doctor appointments.

These words have forever changed our family.

“Mom, has Behcet’s Disease.”

As a kid, I couldn’t quite grasp what that meant. She looked fine to me, but I could tell that there was a sadness in both her and my dad’s eyes. They knew what the disease was already doing to her body and what it had the potential to do.

“There is no cure.”

This was even more difficult to hear. I remember what my next thought was, but I can’t remember if had the courage to ask it, or if they told us the answer before we thought it.

“She won’t die.”

At this point I remember crying. The relief that she won’t leave us, but that she was still sick with an incurable, invisible disease was still hard to take in.

Over the years, I still just saw my mom. I didn’t see the disease first, I saw her first. She is the most amazing, optimistic, role model that a kid could ask for. Super involved, towed us to all our activities, and spent a lot of time making things very special for us. She has the biggest heart and has always put everyone before herself.

I did see what the disease did to her though. Her flare-ups could take her down and she would feel miserable for days at a time. My brother and I quickly learned what to do to help ease her of pain; an ice pack, dark room, prednisone, midrin, cold water and a check-in from her two adoring kids. We knew that she was sick, but she never complained or told us how bad it really was.

She was always optimistic and still is today.

Having a parent with a chronic and rare autoimmune disease did change our lives. There was some really difficult things that we went through, but we have persevered and have become a very strong, resilient team.

I do think that my passion in the field of child life was stemmed from my experience. I have a deeper understanding and emotional connection with families going through similar situations.

Looking back, I wish that there was a child life specialist working with me to help me understand what was happening, to provide support to my whole family and offer interventions that could release feelings and give us the sense of empowerment and normalcy.

I suppose I will take on that role and teach kids what I have learned from both my experience and from the training and education in child life.

To learn more about Behcet’s Disease check out this video from Dr. Yazici at the Vasculitis Foundation. My mom met with him a few years ago and his treatment plan made a HUGE difference in her life!

Here is my mom with one of her four grandkids, spoiling them with ice-cream and Gramy goodies!


My Connection To Rare Disease Day 

International Behcet’s Disease Awareness Day