“I felt so alone and uninformed when I was diagnosed…I don’t want other people to feel that way.” – Ashli S., Graves’ sufferer
If there is any statement that sums up the purpose of “Tales from the Graves’”, this is it. So little is known publicly about this autoimmune disorder, and the disruption it can cause on the lives of everyday people. When it’s diagnosed, it’s a scary, amorphous unknown specter with an ominous name that implies going to the grave. There are made-for-TV movies for cancer and AIDS, and telethons for muscular dystrophy, so the public is well-aware of these inflictions – not so for autoimmune disorders.
According to Medscape in December 2013–a web resource for physicians and other health professionals–Graves’ Disease affects up to two percent of the female population, sometimes appears after childbirth, and has a female:male incidence of 7:1 to 8:1. It occurs most often in middle age (most commonly in the third to fifth decades of life), but is not uncommon in adolescents, during pregnancy, during menopause, or in people over age fifty. There is a marked family preponderance, which has led to speculation that there may be a genetic component. Graves’ currently affects approximately two hundred million people worldwide, three million in the United States alone. In other words, it’s very likely that a great number of people are impacted directly by this disorder (or related disorders, such as Hashimoto’s Disease, Thyroid Storm or the Thyroid Eye Disease), or through friends and family, that would be interested in this material.
Britney Robinson—co-author of this work, through suffering from Graves’ Disease for over 13 years now, has taken great pains to learn everything about this disorder in an effort to minimize its impact on her life and general well-being. In doing so, she joined a support group on Facebook for others to share their experiences–when she joined there were about fifty members. Within a year, that number has blossomed to over a thousand with more people asking to join daily. When she proposed compiling anecdotes into a book, over one hundred and twenty of these members jumped at the chance to share their stories in the hopes of telling others that they are not alone. Realizing the potential of this book to blossom into a huge project, Britney enlisted the aid of her husband, Ray Robinson. Ray is an experienced writer, having put together stories for multiple newspapers and blogs over his career.
This guide will begin with a basic description of Graves’ Disease itself–its origins, signs and symptoms, and diagnosis. Many of the contributors will give their own experiences in what first clued them or their doctors in. You will hear, straight from their own words, their advice on pursuing a diagnosis, finding a doctor that actually knows what Graves’ is (it’s more difficult than you would think!), and the tests they experienced to achieve the correct diagnosis. Special attention will be paid to treatment methods people have attempted (with varying degrees of success), how to stay positive in the midst of a complete life upheaval, and dealing with some of the more noticeable traits–such Thyroid Eye Disease (TED) that can occur in those suffering.
The truly moving draw of this material comes from reading the stories directly from people dealing with, suffering through, and overcoming this disorder. Many don’t mince words–since this is a harsh disease, you will get a real feel for the emotions they pour out. And never the same story twice! You will read REAL tales of lives turned upside down, friends lost and gained, frustration and elation, despair, fear, anxiety and jubilation.
“Tales from the Graves'” is an excellent guide for not only those suffering from thyroid diseases, but for their friends and family to gain understanding, and learn what they can do or say to help.
I am truly proud to have been privileged to hear so many stories from other thyroid patients, I hope I have done justice to their trust, and can help many others see a glimpse into our lives. Thank you to all of them and to my husband Ray Robinson for his help in compiling and writing this book.
Available for Pre-order from now until March 30, 2015, then available for purchase on Kindle platform. Get your copy here!