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Laura Hague Ph.D. is a history instructor at Austin Community College. She has a Ph.D. in history from the University of Texas and is currently doing research on changes in the perception of disability at the end of the 19th century. She is currently having quite a bit of a row with her hands and feet but at least has, as of this writing, her head (physically, at any rate) back on her shoulders. She also has a grown daughter with HEDS, Sarah Meador.
Laura Hague Ph.D.

 

Book Excerpt from Laura's Review
Laura's Review:

The Etiquette of Illness: What to Say When You Can’t Find the Words

Reviewed: Fall-Winter 2005

Wouldn’t it be lovely if there were a how-to guide for dealing with people who have illnesses or disorders? We could just hand a copy to our friends and family, and they would probably be relieved having a simple set of rules to follow. Susan P. Halpern’s The Etiquette of Illness strives to be that book. It falls short, but is a worthy read all the same.

"Chronic Pain and the Family"

Reviewed: Spring-Summer 2005

"Chronic Pain and the Family is a brief overview of the consequences of pain for family life, from the point of view of a pain specialist. The author, Dr. Julie K. Silver, is a professor with Harvard Medical School and a Medical Director for Spaulding Rehabilitation Hospital. She writes as a medical doctor, and not as person with first-hand experience of daily living with pain, or even with a loved one in pain. This makes Chronic Pain and the Family useful as a window in the mind of our doctors. Ever wonder what they are really thinking? Silver lets you know, and you will probably find it helpful."

"Living Well with a Hidden Disability."

Reviewed: Fall-Winter 2004

"Are you increasingly finding yourself left out of activities? Do your friends call less and less often? Do family members make comments about you being lazy? Do you suffer in silence rather than admit that you can’t keep up? If you answer “yes” to any of these questions, you will want to read Stacy Taylor’s workbook, Living Well with a Hidden Disability..."
 

"Power to the Patient: The Treatments to Insist On When You're Sick."

Reviewed: Spring-Summer 2004

"Isadore Rosenfeld's Power to the Patient is one of a growing number of patient self-education manuals...  ...sense that the book was thrown together quickly and with little forethought is accentuated by the poor proofreading on the part of the publisher...  Despite these drawbacks, Power to the Patient is still worthwhile.  It is to-the-point, mostly clear in style, and informative regarding current widely available treatment..."

EDS Today does not recommend this book, we therefore have chosen not to have an Amazon.com link. "The Official Patient's Sourcebook on Ehlers-Danlos Syndrome." by James N. Parker and Philip M. Parker's.

Reviewed: Fall-Winter 2003

"Why did trees have to die for this?  ... I really cannot imagine anyone who needs this book.  If you can use a search engine and have some basic literacy skills, you can find all the information presented in the book on your own.  If you cannot use a search engine and are not literate, this book will be useless."

"Shadow Syndromes" by John J Ratey, M.D., and Catherine Johnson, Ph.D.

Reviewed: Fall-Winter 2003

"Despite the shortcoming of not addressing physically disabled people, Ratey and Johnson's Shadow Syndromes is a reassuring and eye-opening work.  I wish that more popular works on medical conditions were as accessible and useful as this one."

Pain: The Fifth Vital Sign by Marni Jackson

Reviewed: Spring-Summer 2003

"...that is how I feel about Pain:  The Fifth Vital Sign. I had high hopes at first. An entire book about what is known about pain, written in layman's terms. Perhaps there would be discussion of the problems getting pain relief, the problems getting doctors to take seriously patient complaints of pain, the different sorts of body pain and what they indicate. That would be a book to treasure. This one, well, it does have some useful information squeezed in here and there. Unfortunately, author Marni Jackson is so self-absorbed that it is hard to pay attention."

Why We Hurt: The Natural History of Pain by Frank Vertosick Jr. MD.

Reviewed: Spring-Summer 2003

"Dr. Vertosick is one those precious gems, a doctor who does not need to be convinced that his patients suffer. Rheumatoid arthritis he calls "the horror."  Carpal tunnel syndrome he likens to the suffering of crucifixion, and details how the similarity extends from pain experienced to the very same nerve involvement from wrist to neck. Just reading that gave me new respect for my own arm pain. Vertosick covers in thirteen precise chapters the same issues as Jackson does in thirty-three, but with more efficiency and humor."

"Mel Bartholmew's Square Foot Gardening is one of the treasures of gardening.  Any gardener can use the techniques outlines by Mel Bartholomew to continue gardening throughout one's life."
"Cheri Register's The Chronic Illness Experience: Embracing the Imperfect Life (formerly titled Living with Chronic Illness) probes the varied problems of daily living with medical conditions that can not be cured.  Like a friend at the kitchen table, Register uses her experience and that of her acquaintances to illustrate the issues facing those of us with invisible chronic conditions..."

Reviewed: Fall-Winter 2002

"Waist-High in the World : A Life Among Non Disabled more than anything else I have ready, encapsulates the daily struggles of disability.  From getting dresses, to coming to terms with an unglamorous body, to traveling, to simply getting out of bed, Nancy Mairs addresses the hardships and joys of disability."

Reviewed: Spring-Summer 2002

Gallagher has been at the forefront of the disability activism before he was willing to accept himself as disabled.  For decades, he shunned the "professional disabled," those who, having found themselves disabled then found themselves work revolving around the creation of a disability community.  Indeed, he avoided even socializing with other disabled persons.  From the 1980s on, however, Gallagher has accepted membership in this community, and accepted the mantle of leadership.  Black Bird Fly Away : Disabled in an Able-Bodied World is ultimately a chronicle of that change in his own attitudes.

Reviewed: Fall-Winter 2001

Foods That Fight Pain : Revolutionary New Strategies for Maximum Pain Relief.

"Author Neal Barnard, M.D., offers some common sense advice along with generous helpings of macrobiotics masquerading as science...  ... All in all, I don't think EDSers will get a lot from this diet book." 

Reviewed: Fall-Winter 2000

"Fibromyalgia and Chronic Myofascial Pain Syndrome is the sort of book I wish we had for the Ehlers-Danlos Syndromes.  Authors Starlanyl and Copeland are both diagnosed with Fibromyaglia (FMS) and/or myofascial pain syndrome (MPS), and have been leaders in the on-line "FMily" over the past decade."

Reviewed: Spring-Summer 2001



 
This Issue
Lead Article: Clinical Report: Tenascin-X Deficiency in Autosomal
Recessive Ehlers–Danlos Syndrome

Featured Topic: Celebration of Life

Laura's Library: The Etiquette of Illness

 

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