Retinal Degeneration Bibliography 
Retinal Degeneration Bibliography This list was compiled by Nicolas Graner, 24 September 1996, and modified for inclusion in these Web pages by Graham Lewis, 7 May 1997, and Jonathan Abro, 29 November 1997.
The list of books was cited on the RPList electronic mailing list. The "Comments" fields were contributed by various RPList members, and sometimes edited for inclusion in this file.
Please send any comments, corrections and additions to Jonathan M. Abro
Most RP associations publish a newsletter for their members, with research
updates, information on technical and social aids, and any news of interest to the
RP community. There is a list of RP associations
world-wide on these Web pages and you may download a text file with the same
information from these pages or send a message to
listserv@maelstrom.stjohns.edu
with the single line:
GET RPLIST ASSOCS
No scientific journal is entirely devoted to RP, but all major ophthalmology journals regularly publish articles by RP researchers. Several hundred RP-related articles are published each year world-wide.
Every ophthalmology textbook has a section on RP. In addition, the following books provide more specific information.
Title: Retinitis Pigmentosa
Author: John R. Heckenlively
Publisher: Lippincott, Philadelphia
Year: 1988
Comments: A medical text, based on the author's practice, so don't expect
an easy read or answers to questions that aren't yet solved!
Title: Inherited Retinal Diseases: A diagnostic guide
Author: Jimenez-Sierra, Ogden & Van Boemel
Publisher: Mosby
Year: 1989
Title: The molecular genetics of Inherited eye disorders
Editors: A. F. Wright and B. Jay
Publisher: Harwood Academic Publishers, Chur, Switzerland
Year: 1994
Comments: with a background introduction in molecular genetics, and a lot
of information about a variety of disorders, including Retinitis Pigmentosa,
albinism, aniridia, retinoblastome, retinoschisis, macular disorder, etc.
Title:Sensory Genetics/Neuro-development
Author: Sandra L.H. Davenport
Order from: Sandra L.H. Davenport, M.D., 5801 Southwood Drive, Bloomington,
MN 55437-1739
Internet:
slhdaven@maroon.tc.umn.edu
CompuServe:74365,412@compuserve.com
SpecialNet: MNDVNPRT
(612) 831-5522 (V/TTY)
(612) 831-0381 FAX
Price: $25 with a $3 shipping/handling fee for within the United
States.
Comments: It is a visual representation of dual sensory loss. It has a
series of transparencies which are placed on each other in succession to show (1)
how loss of visual acuity is compounded by problems with colour/contrast, (2) how
word recognition is made harder by increasing distance to the speaker and
increasing environmental noise, (3) the increasing problems with blind spots in
RP, (4) increasing loss of central vision due to many conditions like cataracts,
macular degeneration, etc.
The explanation of how to use each page is on the sheet facing the transparency.
The book is not a textbook nor does it do anything more than represent what
information a person is missing. It does not explain in detail how the eye works
or what happens to the photoreceptors of the retina.
Title: Retinitis Pigmentosa: Classification and Treatment
Author: Dr Sara M. Gutierrez
Language: Spanish
Publisher: the regional RP society in Asturias (Spain)
Order from: Mr Andres Mayor
Phone: +34.8.552.20.48 (private)
Price: 1,400 pesetas = $12
Comments: It consists of 3 parts, the first one being the most interesting:
it includes an analysis of all aspects regarding RP, from the history of the
disease to the different clinical, genetic types of RP, the different approaches
to solve it, etc. etc.
Title: A Guide to Independence for Visually Impaired and Their
Families
Authors: Vivian Younger and Juill Sardegna
Publisher: Demos Publications, 386 Park Avenue S. Suite 201, New York, NY
10016
Phone: 800-532-8663
Price: $19.95 US for print, large print, or computer diskette
Comments: this book provides concise, practical information in a
step-by-step manner on how to adapt household chores, handle paperwork and
correspondence, purchase aids and technology and deal with changing family
roles.
Title: La vie est un puzzle (Life is a puzzle)
Langugage: French
Publisher: Association Francaise Retinitis Pigmentosa, BP 62, 31771
Colomiers, France
Phone: +33/5/61 30 20 50
Price: 50FF ($10)
Year: 1994
Comments: a psycho-sociological study of the impact of RP on daily living,
based on a survey of over 1000 French RPers
Title: Through the Tunnel
Author: George W. Jones.
Order from: George W. Jones, The Green Cottage, 3 Minton, Church Stretton,
Shropshire SY6 6PS, United Kingdom
Price: 10 pounds sterling + postage (profits go to the British RP
Society)
Comments: George has RP, with very limited tunnel vision. In 1991, at the
age of 65, he walked Britain from North to South - 900 miles in 30 days - to raise
funds for the "Fight for Sight" campaign. The book tells the story of this walk,
and is packed with comments and anecdotes that will sound familiar to anyone with
RP!
Title: Triumph over Darkness
Author: Pauline Sear
Order from: Mrs. P. Sear, 25 Bersted Green Court, Bognor Regis, Sussex,
United Kingdom
Price: 4 pounds sterling (profits go to the British RP Society)
Title: How to Survive Losing Vision
Author: Helen Harris
Order from: RP International, PO box 900, Woodlands Hills CA 91365, USA
Phone: 800-FIGHTRP is the toll-free number in the US
Price: $11.95 for the tape, $9.95 for the book, both for $16.95; add $3.95
for shipping and handling.
Comments: a book by a woman who is a carrier of RP, and whose two sons are
affected.
Author: Dorothy H. Stiefel
Title: Dealing with the Threat of Loss
Publisher: The Business of Living Publications -- First Person Books
Price: bold print $4.50, tape $6.00 + postage ($2 US, $5.50 non-US)
Order from: Business of Living Publications, P.O. Box 8388, Corpus Christi,
Texas 78468-8388, USA
Phone/Fax: +1 512 852-8515
Comments: This booklet is a primer for the newly diagnosed patient. The
author captures the "day of diagnosis" and ultimate emotional issues and imparts a
blend of personal philosophy with a hearty sense of wit and humour.
Author: Dorothy H. Stiefel
Title: Stress and Well-Being
Publisher: The Business of Living Publications -- First Person Books
Price: bold print $4.50, tape $6.00 + postage ($2 US, $5.50 non-US)
Pages: 92
Order from: Business of Living Publications, P.O. Box 8388, Corpus Christi,
Texas 78468-8388, USA
Phone/Fax: +1 512 852-8515
Comments: This booklet is about stress management and family interactions.
The author touches on the powerful dynamics of family relationships and imparts
ways to increase personal communication skills, and how to alleviate unwanted
stress.
Author: Dorothy H. Stiefel
Title: The 'Madness' of Usher's -- Coping with Vision and Hearing Loss
Publisher: The Business of Living Publications -- First Person Books
Price: bold print $7.50 or Tape $12.50 + postage ($2 US, $5.50 non-US)
Order from: Business of Living Publications, P.O. Box 8388, Corpus Christi,
Texas 78468-8388, USA
Phone/Fax: +1 512 852-8515
Comments: This book is about a lifetime of ongoing personal adjustments and
functional adaptation. The author explores the fear induced by a dual-sensory
loss, and presents graphic insight into her personal "madness."
Author: Dorothy H. Stiefel
Title: Knotholes are for 'Seeing' -- Therapy through Poetry, Prose, and
other writings
Publisher: The Business of Living Publications -- First Person Books
Price: bold print $12.95, tape $17.95 (avail. Jan 1997) + postage ($2 US,
$5.50 non-US)
Pages: 214, or three 90-minute tapes
Order from: Business of Living Publications, P.O. Box 8388, Corpus Christi,
Texas 78468-8388, USA
Phone/Fax: +1 512 852-8515
Comments: This is an autobiographical account of the author's life through
the coping mechanism of journal writing. The author indulges and captivates the
reading audience with the story of her passage into adulthood and toward a
spiritual awakening and a sense of belonging. The cassette version offers
delightful listening pleasure by an Australian narrator who takes the author's
impassioned poetry, humorous prose, and her poignant journal entries through
questioning youth, the tribulations of motherhood, and a lifetime of overcoming
adversity to finally realising the true meaning of life.
Title: Ordinary Daylight
Author: Andrew Potok
Binding: 290-page hardback
Year: 1980
Publisher: Holt, Rinehart and Winston, 383 Madison Ave., NY, NY, USA.
Availability: out of print
Comments: Potok, who was an artist until his RP caught up with him, weaves
this autobiographical narrative around his search for a cure at the hands of a
colourful, eccentric woman who claimed she could cure RP with a regimen of bee
stings administered daily over a long period. Interspersed with the story of this
unique experience are Potok's reflections on the emotional and personal
experiences common to all of us in the situation that has brought us together
here. Funny, poignant, informative, highly intelligent and literate, Ordinary
Daylight gave me the comfort, amusement, and feeling of recognition and
identification I hadn't found in any other RP literature, no matter how well
intended.
Title: The Story of Carolyn James, Images from the Dark
Author: Andrew Whitehouse
ISBN: 1 85291 078x
Year: 1990
Comments: Carolyn James is that rare but not unique person, a successful
blind artist. Diagnosed at the age of nine as a case (sic) of Retinitis
Pigmentosa, she was never clearly told about the condition or its inevitable
result. During her late childhood and teens, she experienced the quite devastating
withdrawal of her sight, and with it a growing awareness of her isolation from
society. Grasping for an explanation of what seemed to her merely her own
dimwittedness, she clung desperately to the memories imprinted in her brain by her
failing visual sense.
Title: La tricheuse de la nuit (Cheater in the night)
Author: Beatrice Alcala
Language: French
Publisher: editions du Tricorne, Geneva, Switzerland
Comments: autobiography of Beatrice, a journalist with RP
Title: Blindstyre
Author: Taeppas Fogelberg
Language: Swedish
Publisher: Norstedts Foerlag, Stockholm
Year: 1994
Price: approx $25
Pages: 300
Comments: Fogelberg is one of the most popular Swedish TV and Broadcasting
journalists and suffers from RP. He describes all his daily threads, from such
topics as erroneous diagnosis, over raising small kids, problems of "coming out",
using the white cane and so on. He hates his disease. The book is a psychological
challenge for every RPer.
Title: Bevor es dunkel wird (Before it gets dark)
Author: Taeppas Fogelberg
Language: German
Publisher: Arche Verlag, Zuerich-Hamburg
Year: 1995
Comments: German translation of the above "Blindstyre"
Title: { something about Manhattan or NYC }
Author: Judith Krantz
Comments: the character is an executive type guy.
Title: Jessica's Dying Light
Author: Jan Kenneth
Publisher: Dell paperback edition
Year: 1993
Comments: a book for children/young adults.
Title: a series of novels, each with a title beginning "Blood..."
Author: Tanya Huff
Comments: quite nice stuff, both as mysteries/sf and as celebrations of
coping. Good local feel to the Toronto scenes.
Title: My Life with Gloria
Author: Andrew Potok
Comments: It is a fictional novel about a young boy and his mother.
This Page was last updated on : 04/04/1999
Original address of this page:
www.brps.demon.co.uk/White/W_Articles_3.html
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