Last Updated on 21st November 2023 by Caroline Haye
From text books to cook books, fiction to autobiography
Whether you prefer to e-read on your device or to feel real pages between your fingers, books are special. They offer a world of education, information, inspiration and entertainment. They have the power to engross and to elevate us to another plane. As one witty scholar of literature (Mason Cooley) put it… “Reading gives us someplace to go when we have to stay where we are.” And if where you are is living with vitiligo, then having somewhere informative or uplifting to go can be a godsend. A huge boost to your understanding of the condition as well as to your morale. So, with that in mind, I have put together a vitiligo reading list which I hope will offer something for all tastes and needs.
But before we start, I should explain that I have not simply listed any old books I could find with vitiligo in the title. In fact, I have included one is not even about vitiligo but feel is relevant for other reasons. And I have excluded a whole bunch of others that are vitiligo-specific but don’t make the grade. (I am sad to say that some of those were short on genuine content. To put it bluntly, several looked like they were written in a hurry by someone simply wanting to cash in.) The following books, on the other hand, are all well written and well worth a read.
Factual vitiligo books
A No-Nonsense Guide To Vitiligo by Yan Valle
Written by “vitiligo survivor” and CEO of the Vitiligo Research Foundation, Yan Valle, this is a thoroughly researched, easy-to-read and jargon-free layman’s guide to the condition. It draws on the author’s own experiences and years of gathering in-depth information on all aspects of vitiligo, including its causes, triggers, symptoms and treatments… From traditional medicine to cutting-edge scientific research. This book provides a valuable overview for vitiligo patients, or anyone else with an interest in the condition.
Vitiligo (Second edition) edited by Mauro Picardo, Alain Taïeb
This widely revised and updated second edition, written by worldwide experts in the field, is an altogether “meatier” text book which will appeal to readers who have a more scientific background or who are willing to tackle some scientific language in order to get a greater understanding of the state of play in vitiligo research and treatment. It gives an insight into why vitiligo, as compared to other common skin conditions, has presented such a challenge to researchers. And it charts the ongoing international effort to collaborate and share both research and clinical data about the condition.
Autobiographical vitiligo books
Turning White: A Memoir of Change by Lee Thomas
Now a globally recognised vitiligo advocate, Emmy Award-winning American TV broadcaster Lee Thomas was 25 years old, successful and enjoying his dream job, when his skin started losing its colour. This is the story of his physical and mental battle with his condition and his career as a media personality in the public eye while vitiligo literally started turning him white.
Living with Vitiligo by Eugene O’Ryan
In this autobiographical book, project manager in South Africa, Eugene O’Ryan writes about the profound and hidden psychological complications vitiligo can cause… From the eternal question – Why me? – to the inevitable contra-question – Why not me? He charts his vitiligo journey from childhood to ultimate acceptance forty years later. And in a final revealing chapter, his wife talks about the situation from her point of view.
Diet and nutrition for vitiligo
The PK Cookbook by Dr Sarah Myhill
Dr Myhill has been helping sufferers of debilitating chronic conditions (including autoimmune diseases) for over 30 years. As a GP, her refreshingly holistic approach combines all the benefits of conventional medicine with a deep knowledge and appreciation of the importance of nutrition and lifestyle. She recommends a Paleo / Keto diet for optimum health and this highly practical cook book contains tried and tested recipes for eating the “PK” way.
The Use of Vitamin Therapy for the Treatment of Vitiligo by Audrey VanStockum
This well-researched book strikes a balance between scientific detail and simple explanation. A useful read for anyone, regardless of their prior level of knowledge. The author explains what vitiligo is and the processes that research suggests are involved in its development. She then reviews key vitamins and minerals used by the body to produce skin pigment. And she describes the role played by each one, plus the adverse effects of deficiencies. More…
Fiction featuring vitiligo
Dappled by Lisa Brown
Written by a young Australian woman who has the condition herself, Dappled is a psychological romance about life and vitiligo. As an occupational therapist, Lisa wanted to tell a story that explored a number of themes that were familiar to her in her life and work… Including love, loss, friendship, mental illness, disability, and self-acceptance. The central relationship in this story teaches the heroine Jane that she can be both beautiful and dappled at the same time. Along her journey she discovers the truth that healing cannot come from anywhere external – it needs to come from within.
How to Disappear Completely by Ali Standish
“When Emma discovers the first spot, ‘like a tiny bright moon’ on her left foot, she’s at the funeral of her grandmother, who had been her best friend as well. The diagnosis is vitiligo, a skin condition triggered by stress. Creating a large multi-generational cast, Standish knits an absorbing story of loss, identity, and human connections. A rewarding, realistic novel, illuminated by magical elements.” While this is a novel written for teens, it is an equally enjoyable read for adults, especially those with experience of vitiligo.
The power of books
I have done most of my (extensive) reading on the subject of vitiligo online… For the simple reason that this is where most of the information on it is to be found. In fact, when I started my vitiligo-related reading, I could not find a single book available anywhere on the subject. At least none suited to non-scientists like myself. But I am glad to say that this is starting to change, as the reading list above shows.
The power of books cannot be overstated. If schools could teach children only one skill (God forbid), it would have to be reading… Because, once you have the ability to read, you can learn everything else there is to learn. Not only do books open up a world of knowledge but they also offer a lifetime of companionship, entertainment, wisdom and inspiration.
As Nobel Peace Prize laureate Malala Yousafzai put it, “One book, one pen, one child, and one teacher can change the world.” This is true of vitiligo literature as much as any other. As more people write about this under-represented skin condition, public awareness and understanding of it will continue to increase. Myths and prejudices will decline. And the drive for better treatments will accelerate.
The number of well-written, well-researched books about vitiligo is still small. But it is growing. And the trend is also happening in children’s literature. Several new story books for kids have appeared recently, featuring characters with vitiligo. What a great way to help children understand what vitiligo is and to help them to feel comfortable in their skin… As well as to become more accepting and understanding of others who have the condition. But that reading list will have to be a topic for another post.
2 thoughts on “A vitiligo reading list”
I do not have vitiligo, but I am doing lots of research about it. I am currently writing a sci-fi/fantasy series and want to include it in my story. I love the myriad stories I have read by people with it, and I want to be as respectful as possible when including it, if I even should. My question is, how can I do this without using terms like blemish or blotch? I feel like those carry negative connotations, and I really do not want to present it this way. I want it to be something that can make my characters more real, approachable to people. Conversely, if I am off base for even asking, tell me that too, and I will head in another direction. I have just been fascinated with the diversity of people that I have read about with vitiligo and want to add an element.
Thanks for your sensitivity in asking about this, Sean. I agree with you that the diversity of the human race is fascinating and, in my own view, reflecting this in works of fiction is always a positive thing to do. Not only does it make characters more believable, it also helps to raise awareness and is encouraging for those who see themselves represented in the story. Of course, how you choose to describe vitiligo will depend on the voice or viewpoint of the characters (or the narrator) in your stories. You might be describing the thoughts of a character who has vitiligo and is unhappy about their appearance, in which case terms like blemish or blotch would make sense in the context. But if you are looking for ways to portray it in a positive or neutral way the following suggestions might help you get started: pale patches, white patterns, marbled, dappled, two-toned, monochrome, de-pigmented areas, unique colouring, natural “body art”, nature’s tattoos, contrasting skin tones, missing pigment. I hope this helps. Good luck with the books… do let me know when they are published and I can give them a mention. 🙂