Rare Disease Writer

As a rare disease writer, every project is precious, humbling and meaningful. I wanted to take a few minutes this evening and share a recent collaboration, a very important collaboration that shines a spotlight on Charcot Marie Tooth disease. No, it has nothing to do with “teeth” and everything to do with a rare neurological condition.

It’s late, almost midnight, and a new month will be here in thirty minutes. So this post is written barely in time to celebrate the October 31, 2020 launch of author Dawn Johnson’s new book.

disease writer

I am thankful that this last day in October has been productive — filled with Halloween, daylight savings time, and a lot of presidential election coverage. It was such a special launch day for Living with CMT: A Mother and Son Journey through Charcot Marie tooth Disease.

As a Rare Disease Writer, Some Stories Will Stay With Me Forever

I worked with Dawn on her manuscript for nearly two years. In that time frame, she lost her son Ryan, only twenty-years old. This occurred on Christmas day, no less, as her newly independent child visited for the holidays. Ryan, too, had CMT, but this was not the cause of his passing. He had an undiagnosed heart condition that lead to his death — completely unexpected, shocking and devastating.

I honestly wasn’t sure if Dawn would be able to continue with her manuscript. It was meant to be written with her son, and his passing meant that the chapter he was working on was incomplete.

To Dawn’s great credit, she pressed on in tribute to Ryan and those who endure the disease.

At Books & Barrels

The Amazon Listing says it all

Welcome to the world of Charcot Marie Tooth (CMT) disease, a rare, progressive and hereditary neurological condition. Author Dawn Johnson takes readers through the physical challenges—the toll on the body, passing the disease on to her son, numerous surgeries, and ongoing treatments. She addresses the emotional toll as well, weighing in on the societal issues of bullying, lack of CMT awareness, giving back and paying it forward. Most of all, Dawn’s spiritual journey is inspirational. As a wife, mother, daughter, co-worker and friend, she shares a raw and courageous view of coping, while trusting God’s plan for her life.

Find Dawn Johnson’s book on Amazon

Other Medical Writing and Editing Projects

Check out my blog post on Nadine Sand’s memoir High and Wide, and journey through her husband’s ALS diagnosis. This poignant tale is the sweetest love story I’ve ever had the honor to work on — grounded in faith and courage, but also intensely personal.

Do you have a medical memoir to write? Contact me and I’ll be happy to consult. I believe these books are some of the most important because they allow us to glimpse into situations we may face ourselves one day, but also develop a greater well of compassion for those who walk the walk.