How to live better with lymphedema Meet the experts

Review by Anna Kennedy. Book written by Matt Hazledine and guests

Introduction

On a recent search through the Amazon website, I discovered more than a handful of new books about lymphedema, all published within the last 18 months. Many of the books are authored by patients and seem to be primarily focused on diet, recipes and what to eat if you have lymphedema.

Assessing credibility

Caution is advised when reading any resource on lymphedema. The reader should carefully review the author’s credentials, whether their sources are rooted in evidencebased research in addition to identifying any possible conflicts of interest. Any book that includes statements or claims such as “no more”, “get rid of” or “reverse” a chronic and life-long disease like lymphedema, should raise a red flag.

Guest co-authors

However, a recent book that stands out is “How to live better with lymphoedema; meet the experts.” The author is Matt Hazledine, an expert patient, who in searching for answers, solicited trusted guidance from over 20 well-known guest lymphedema experts within the international lymphedema community. Some of those experts are affiliated with the International Lymphoedema Framework and include Peter Mortimer, Christine Moffatt, Vaughan Keeley and Kristiana Gordon. Their contributions to the book are in their own words as direct quotes. Although all of these guests live and work in the United Kingdom (as does the author), most of the information is relevant to people living with lymphedema in other countries as well.

Perhaps only some of the local resources referring to therapists, specialists, support groups and some clothes/shoes, are applicable to the UK population exclusively.

Personal experience

Matt is an activist living with lymphedema as a result of non-cancer related lymphedema. Although his frustrations at the beginning of his diagnosis mirror that of most people faced with lymphedema, he moved beyond those frustrations to deliver this book as a message of positivity and hope. His biography states that he has worn every appropriate type of compression garment, tested almost every product, experienced all therapies known to him and had two different types of surgeries. He shares his own trials and tribulations over the past 10 years of his lymphedema journey with honesty, humour and humility. The practical information that he has learned along the way is sprinkled throughout the book as 40 tips, and also neatly summarized in the Appendix.

Book structure

The guest experts cover the traditional four cornerstones of lymphedema management focusing on the physical components, but also cover the psychological and social aspects. The book is divided into 30 chapters, each devoted to a single subject addressing various questions and aspects of living with lymphedema. Of note, there is an interesting sub-chapter dedicated to the discussion of whether lymphedema should be referred to as a condition vs. a disease.

Sources

The book can be purchased through Amazon as a printed copy or as a Kindle option for the digital version. The author has dedicated 25% of the pretax profits to the Lymphedema Research Fund at St. George’s Hospital in London, England. You can also check out the website of the charity that the author has founded. www.lymphoedemaunited.com

In case you missed it

There was a previous article in Pathways (Winter 2021-22) entitled “Don’t judge a book by its cover” that provided guidance on assessing resources and books for lymphedema. You can access the archived article at tinyurl.com/LEBookRev