New Book Published for Individuals and Families Diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD) Ahead of World FSHD Day on June 20

Naoki Hihara, representative of Cell Healing, has published a new book titled 'FSHD: The First Book to Read After Diagnosis, Volume 1' on Kindle, released on June 17, 2026, for individuals diagnosed with facioscapulohumeral muscular dystrophy (FSHD) and their families.

The English edition, 'FSHD: The First Book to Read After Diagnosis,' was also released on Kindle on June 16, 2026.

This book was created to coincide with 'World FSHD Day' on June 20, aiming to fill the information gap that often arises immediately after an FSHD diagnosis—when people are unsure where to begin researching.

Organizing Essential Information Right After Diagnosis

FSHD is a hereditary muscle disease that commonly causes muscle weakness in the face, shoulder girdle, and upper arms. Symptoms and progression vary significantly between individuals and can affect not only the face, shoulders, and arms but also the trunk, lower limbs, walking ability, fatigue, pain, breathing, eyes, hearing, and daily activities.

Immediately after diagnosis, patients and their families often search online for information about disease progression, life expectancy, treatments, genetics, rehabilitation, clinical trials, and lifestyle considerations.

However, this information tends to be highly technical and fragmented, making it difficult to determine what to understand first and what questions to ask their primary physician.

This book is an introductory guide that compiles the most essential information about FSHD in a format accessible even to those who have just received a diagnosis.

Contents of Volume 1

Volume 1 focuses on providing an overview of FSHD and key medical and lifestyle information to review right after diagnosis.

Main topics include:

- What is FSHD? - Symptoms affecting the face, shoulder girdle, upper arms, trunk, and lower limbs - Asymmetry and compensatory movements - Key considerations for pediatric and early-onset FSHD - Breathing, eyes, hearing, heart, pain, and fatigue - Diagnosis and genetic testing - Basics of FSHD1, FSHD2, D4Z4, and DUX4 - Severity levels, assessment metrics, and natural history - Standard care, rehabilitation, assistive devices, and surgery - Clinical trials, new drugs, and current status of DUX4 suppression research - Genetic counseling and family implications - Differences from other types of muscular dystrophy

Additionally, the book includes observational records of physical changes documented through Cell Healing’s clinical practice. These are not clinical trials proving medical efficacy and do not guarantee specific outcomes.

Planned as a Three-Volume Series

'FSHD: The First Book to Read After Diagnosis' is planned as a three-volume series.

Volume 1 organizes foundational knowledge about FSHD, symptoms, diagnosis, standard care, and clinical trial information.

Volume 2 will explore the theme 'Why muscle mass, strength, and movement may change in FSHD,' covering Cell Healing’s physical action hypothesis and three additional hypotheses: anti-inflammation, abnormal protein degradation, and cell activation. It will also discuss evaluation of recovery, improvement, maintenance, and compensation, along with treatment and lifestyle tips by symptom.

Volume 3 will cover actual treatment processes, home care, supportive approaches, case records from the U.S., Malaysia, and Japan, and perspectives on maintaining realistic hope without being misled by misinformation.

Volume 2 is scheduled for release in late June 2026, and Volume 3 in early July 2026.

Author’s Comment

Immediately after an FSHD diagnosis, many people begin searching online in a state of anxiety.

However, the information they find, while medically accurate, can often feel cold and impersonal to patients and their families.

This book organizes essential information—such as FSHD basics, key symptoms, standard care, clinical trial updates, and lifestyle considerations—into a format that is easy to read even right after diagnosis.

Rather than letting a diagnosis define one’s future, I hope this book serves as an entry point to understanding the disease correctly, recording one’s own physical changes, and connecting with appropriate medical consultations.

Naoki Hihara

Bibliographic Information

Title: FSHD: The First Book to Read After Diagnosis, Volume 1 Author: Naoki Hihara Format: Kindle Edition Price: 790 JPY Release Date: June 17, 2026 Sales Page: https://www.amazon.co.jp/dp/B0H5N56PG7 Note: Volume 1 of a three-volume series

FSHD: The First Book to Read After Diagnosis

English Edition: FSHD: The First Book to Read After Diagnosis Release Date: June 16, 2026 Sales Page: https://www.amazon.com/dp/B0H5L3RFXS

FSHD: The First Book to Read After Diagnosis

Disclaimer

This book is intended to provide general medical and health information about FSHD, lifestyle considerations, and observational records of physical changes. It does not replace medical diagnosis, treatment, medication, rehabilitation, genetic counseling, or any other medical services provided by physicians.

For specific decisions regarding symptoms, diagnosis, testing, treatment, medications, rehabilitation, assistive devices, surgery, respiratory management, or genetics, please consult your primary physician or other qualified healthcare professionals.

The progress and changes described in this book vary between individuals and do not guarantee specific outcomes. Furthermore, the content of this book does not recommend discontinuing or altering existing medical treatments, rehabilitation, medication, hospital visits, tests, or participation in clinical trials.

About the Author

Naoki Hihara. Representative of Cell Healing. Provides therapeutic support in Tokyo for individuals facing challenges in physical function and daily activities.

Also publishes books that organize medical information, standard care, lifestyle considerations, and how to interpret records of physical changes—tailored for patients and families affected by neuromuscular diseases such as muscular dystrophy and ALS.

Not a physician. The books are intended for general informational purposes and do not substitute for medical diagnosis or treatment by licensed professionals.

Inquiries

[For inquiries regarding this announcement]

Multiply LLC (Cell Healing) Contact: Naoki Hihara Email: info@cell-healing.com Official Website: https://cell-healing.com/