7 Scleroderma Books You Might Want to Read

In honor of Scleroderma Awareness Month, we’re sharing some of our favourite scleroderma books.

1. “The Scleroderma Book: A Guide for Patients and Families” by Maureen D. Mayes
This is the book to get if you want to learn more about scleroderma. Considered one of the most complete and reliable sources of information on the disease, this guide was written by Dr. Maureen Mayes, M.D., the leading authority in the field. The book was written, as the title suggests, to be a guide for patients and their families. It starts off with the basics and goes deeper into the daily life and choices someone with scleroderma has to deal with. All in all, this book tries to show you how to be a “person living with” scleroderma and not a “victim suffering from” it.

2.  “If You Have to Wear an Ugly Dress, Learn to Accessorize” by Linda McNamara & Karen Kemper
The title might seem a bit tongue-in-cheek but it’s actually a very good choice for this book. In it, the authors gathered personal stories and poetry about both scleroderma and other autoimmune diseases. Patients describe their journey from diagnosis and teach others that even though you may wear the ugly dress (your illness), your illness does not define who you are.

3.  “The First Year: Scleroderma: An Essential Guide for the Newly Diagnosed” by Karen Gottesman
Karen Gottesman learned everything she could about scleroderma from the moment she was diagnosed. She then decided to put it down on paper in a step-by-step guide teaching others how to get through the first year. There’s a lot of helpful information, including various charts and tables, that makes the learning experience as easy as possible.

MOREHow you can get involved in Scleroderma Awareness Month

4. “Scleroderma Coping Strategies” by B. Bianca Podesta
The book takes the time to painstakingly explain how the disease works, to show the reader the psychological challenges that patients must face and goes into the healing process in a both practical and spiritual way.

5. “Scleroderma: The Proven Therapy That Can Save Your Life” by Henry Scammell
This book presents the results from a clinical trial that studied (at the time this book was published) the first and only therapy that reported a reversal and remission of scleroderma. And despite what you may think, it’s not a dry read.  Scammell takes the reader on a journey from Dr. Brown’s first scleroderma patient and how he discovered that the simple, safe therapy described in this book could be a cure.

6. “My Mom’s Special” by Andrea Oakland
This illustrated children’s book by scleroderma patient, Andrea Oakland, and illustrations by her mom, Meredith Allister, describes ways that children can help a parent or loved one that suffers from scleroderma. It’s told from a young girl’s perspective as she lives her day-to day life with a mother who has scleroderma. Andrea dedicated the book to raise funds, awareness and support of the SRF.

7. “Journey Beyond Diagnosis” by Greg Pacini
Journey Beyond Diagnosis is not about scleroderma specifically. It’s a broader look at what an illness experience truly means. Greg Pacini wrote this book as a way to help caregivers, survivors, and medical professionals by comparing an illness to a long road trip and explaining how it’s a journey of body, mind, and emotion.

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Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

One comment

  1. Robert says:

    “Scleroderma: The Proven Therapy That Can Save Your Life” by Henry Scammell

    Unfortunately, the “Proven therapy that can save your life” is not proven. There was one very small trial which indicated that it might work for some and one slightly larger trial which indicated that it did not work at all.
    In otherwords, its not really proven or disproven. There are anecdotal accounts of it working and anecdotal accounts of it not working.
    There is also the problem that studies show that it can induce a lupus like syndrome, which can abate when the drug is stopped but does not always. So it is also incorrect to say that its safe, as the above article does. Its relatively safe. What is needed is is a proper clinical trial to determine whether or not it helps push scleroderma into remission. Maybe all the doctors who currently provide the scleroderma anti-biotic protocol could help fund such a study. It would be the ethical thing for them to do since they are benefiting financially from their current assumption or claim that it works.

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