IN THE GENOME ERA
edited by Betty S Pace (University of Texas at Dallas,
ISBN 978-1-86094-645-5 1-86094-645-3  http://www.worldscibooks.com/lifesci/p443.html

This is a wonderful text book for clinical and basic researchers in hematology and genetics, graduate students and postdoctoral fellows; Secondary market: Nursing students, community sickle cell programs, medical school libraries, public library. It has several great authors who are the leaders in sickle cell research and treatment. This book is great for any one wanting to know the current state of  sickle cell disease research.

New Book Resource for Patients: Overcoming Pain

The 229 page paperback book is endorsed by the American Pain Foundation (http://www.painfoundation.org/) one of the nations largest patient support organizations. The Foreword by William Rowe, Executive Director states “This book in not only an important read, but an important reference resource. As people search for the combination of elements for their pain management plan, this book can be a guide each time there is a question about which way to turn. A thank you to the authors for providing such an easy to read and comprehensive map.”

The realities of under-assessment and poor treatment of minority patients—and how to avoid them  Clear, concise details on successfully managing your pain—and lead a more normal life  Ways of working with pharmacies in minority neighborhoods that don’t have the right medications available
Successful strategies for end-of life-pain hospice care that is currently under-utilized by minorities  Plus a comprehensive list of resources for minorities, including pain specialists and clinics, support groups nationwide, organizations, websites, and more. http://www.journeytowellness.com/featured_book.php?id=3

The Emory University Press release for Overcoming Pain is  at http://www.whsc.emory.edu/press_releases2.cfm?announcement_id_seq=7900

The book is published by Hilton Publishing Company http://hiltonpub.com/ and is the second book for Allan Platt PA-C who co-authored Hope and Destiny The Patient and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait published in 2004 and just updated in 2006

OVERCOMING PAIN is now available from Hilton Publishing Company, to order your copy/copies please contact:

Amazon.com http://www.amazon.com/Overcoming-Pain-PA-C-Allan-Platt/dp/0974314420/sr=8-5/qid=1160573574/ref=sr_1_5/104-1838711-9735102?ie=UTF8&s=books

New Sickle Cell Educational Pamphlet for Patients and Family members

From Hilton Publishers. This15 page color pamphlet is written by the same team that wrote Hope and Destiny - A Patient and Parents guide to Sickle Cell Disease and Trait. This is loaded with the most common questions and problems patients face. It is available for $1.95 each from Hilton Publishers http://hiltonpub.com/

New and Updated Second Edition of Hope and Destiny - The Patient and Parent's Guide to Sickle Cell Disease and Trait is Released July 2006

New Chapters include:

 Managing Depression and Anxiety Participating in Sickle Cell Research

Updated Chapters in Part 1 The ABC's of Sickle Cell Disease with all the basic information Part 2 Developmental Issues with age specific guidelines, and Part 3 Living with Sickle Cell Disease with a pain management guide, new treatments, research and resources.

Updated research and treatment information with the latest on bone marrow and stem cell transplants, pain management, pulmonary hypertension, chelation, hydroxyurea and new medications in clinical trials. Updated web links and resources. The first edition sold 16,000 copies since first published in 2002.

New ISBN-10:0-9764443-5-6 and

ISBN-13: 978-0-9764443-5-0

Volume discounts available at Hilton Publishing ay http://HiltonPub.com

contact Tara Brown at 704-841-0709;

New Patient and Parent Guide book: Hope and Destiny, A Patient's Guide to Sickle Cell Disease and Trait

An up-to-date, informative, and personal discussion of sickle-cell anemia, this guide provides information on medically proven methods of treatment along with patient vignettes. With writings from  the staff and patients of the Georgia Comprehensive Sickle Cell Center, this handbook for patients and those who live or work with them examines the complex issues that surround this genetic disease. Advice on healthy living that affects sickle-cell patients is offered in layman's terms to aid patients and caregivers in making informed decisions.  Available from Hilton Publishing  order from Barnes and Noble , Booksamillion,  or Amazon

The National Pain Foundation Book review - Hope and Destiny A Patient and Parent's Guide to Sickle Cell Disease and Trait http://www.painconnection.org/MyTreatment/BookReview_SickleCell.asp

Review on Partners Against Pain http://www.partnersagainstpain.com/painadvocacycommunity/05-05/Caregiver.asp

New - Gift of Hope Program (reduction in retail price) in order to assist  (Hospitals, Clinics, Centers, Primary Care Physicians, Nurse Practitioners)  in purchasing the books in bulk to give to all of their patients. You must at least purchase 20 books on the initial purchase @ $8.47 + s&h Program # GOHP1001103-02

Additional Discounts are based on total number of books purchased Purchases are accumulated so you can order books for  new  patients (1 at a time) and continue to receive the bulk discount rate that  you initially paid...i.e. $9.47.
To order by mail: Send check, money orders or purchase orders to:

Hilton Publishing Company, Inc.
P.O. Box 737
Roscoe, IL. 61073

To contact us by telephone or via email: (866)455-1070 or info@hiltonpub.com

For more information or ordering: http://www.ampainsoc.org/pub/sc.htm

In this book, clinical leaders in hospital, behavioral health care, ambulatory, long term care, and hospice settings describe how they developed and implemented pain management programs to address Joint Commission standards and how they make pain management an integral part of their care services. Chapter 5 is a description of the pain management at Georgia Comprehensive Sickle Cell Center at Grady Health System. The book explains
    how to commit the organization to pain management, 
    how to establish an effective pain management program, and 
    how to identify and use evidence-based medicine resources for the most current clinical practices in this rapidly changing field. To order or for more information see http://www.jcrinc.com/generic.asp?durki=3873

New Book Resource

Menace In My Blood: My Affliction With Sickle-Cell Anemia

by Ola Tamedu

187 pages; quality trade paperback (softcover); catalogue #04-2825; ISBN 1-4120-5017-0; US$19.50, C$22.42, EUR16.02, £11.21

Author Ola Tamedu relates growing up in a fairly well-to-do  family in West Africa and highlights the difficulties of life with sickle cell disease. http://www.trafford.com/04-2825

Call Me Gene/My Name Is Gene, are science books narrated by a gene who walks students through major advances in genetics, from Gregor Mendel’s experiments with pea plants to modern animal cloning and the Human Genome Project. Call Me Gene and its workbooks Fun With Gene, which feature clear, simple language and numerous full-color diagrams, have been accepted as middle school supplementary science books by several cities and states such as, California, Utah, Alabama and New York City. In addition, Call Me
Gene was also selected as a prize gift by the Aventis CropScience Award for biotechnology science projects. An excellent teaching resource to learn about genetics and sickle cell disease.

http://www.science2discover.com/

Sickle Cell Guide from Brazil

Online Guidebook for Sickle Cell Disease in Portuguese by Dr.Heloisa Helena Arantes Gallo da Rocha  a Hematologist in Brazil: Professional Guide  and Patient Guide

Sickle Cell Disease: Information For School Personnel a free  online book for school nurses, teachers and counselors from the New Jersey Department of Health & Senior Services Division of Family Services Special Child, Adult and Early Intervention Services at http://www.state.nj.us/health/fhs/sicklecell/index.html for a free copy  contact:

Special Child, Adult and Early Intervention Services
New Jersey Department of Health and Senior Services
P.O. Box 364
Trenton, New Jersey, 08625-0364 

(609) 984-1343
Fax (609) 292-3580

 Sickle Cell Disease in Children and Adolescents: Diagnosis, Guidelines for Comprehensive Care, and Protocols for Management of Acute and Chronic Complications©
Revised at the Joint Regional Hemoglobinopathy Conference Mountain States Regional Genetic Services Network (MSRGSN) Texas Genetics Network (TEXGENE) Sedona, AZ November 12-14, 1999
View and Download at http://www.tdh.state.tx.us/newborn/sc_guide.htm

by Keith Wailoo, The University of North Carolina Press, 2001 - A well researched  history of sickle cell disease in Memphis, home of the nation's first sickle cell clinics. From the 1950 through today, this is a valuable resource for those involved in sickle cell care. To see a sample chapter and ordering information go to: 

http://www.ibiblio.org/uncpress/chapters/wailoo_dying.html

This is an excellent book written for lay audiences by the former senior editor fot the Journal of the National Cancer Institute. The book is well orrganized and contains current information explaining the origins, complications, treatments and the future of reseach for sickle cell disease. It is excellent for patients, parents and lay audiences interested in sickle cell. The book is available at a 25% discount from University Press Books,
601-982-1800, and online at http://www.sciwrite.com/sickle.html

1. Sickle cell Related Pain : Assessment and Management A Guide for Patients and Parents.

2. Quick Clinical Regference Guide for Health Care Providers

3. Sickle Cell Related Pain: Assessment and Management Conference Proceedings.

Contact NERGG at 207-288-2704 or thier website at http://www.acadia.net/nergg/booklets.html

Part 2, Six to Eighteen Years of Age Available through the State of California Public Health Genetic Disease Branch phone 501-540-3295

Sickle Cell Disease in Newborns and other AHCPR monographs

New 2002 - Management and  of Sickle Cell Disease Fourth Edition - Now available online -Click here  You can download the entire book as an Adobe pdf file at http://www.nhlbi.nih.gov/health/prof/blood/sickle/index.htm

To phone order book copies call 301-592-8573. Price Information
Single copy  $5.50 + shipping
25 copies $116.00 + shipping
100 copies $440.00 + shipping

to order http://www.hiltonpub.com/portfolio/

Chapter on Sickle Cell Disease updated by Allan Platt PA-C from the Georgia Sickle Cell Center

$16.95 Paperback November 15, 1999 Supported by Pfizer Pharmaceuticals, Inc. ISBN 0-9675258-1-0 

Click here for more information

Oxford University Press click here

Amazon.com

A Guide to Sickle Cell Disease – an 86 page paper back reference with color pictures and guides for common problems. The Sickle Cell Trust and Dr. Graham Serjeant in Jamaica. $30, Address: 14 Milverton Crescent, Kingston 6, Jamaica, West Indies. Phone 876-970-0077 Fax 876-970-0074 email grserjeant@cwjamaica.com

Living with Sickle Cell Disease- a 27 minute VHS video produced by the Sickle Cell Trust and Dr. Graham Serjeant in Jamaica. $30, Address: 14 Milverton Crescent, Kingston 6, Jamaica, West Indies. Phone 876-970-0077 Fax 876-970-0074 email grserjeant@cwjamaica.com

Sickle Cell Teaching Slide Sets - There are 35 of the 35mm slides in each set 1. Clinical Features demonstrating common complications. 2. Epidemiology – Sickle cell around the world. $100 each or $185 for both sets.The Sickle Cell Trust and Dr. Graham Serjeant in Jamaica. $30, Address: 14 Milverton Crescent, Kingston 6, Jamaica, West Indies. Phone 876-970-0077 Fax 876-970-0074 email grserjeant@cwjamaica.com

Puzzles is a story about Cassie, a school-age child with sickle cell disease. Her physical difficulties are common to children with this inherited blood disorder. Her illness also affects her feelings about herself, her friends, her family and others. A supportive adult, reading Puzzles to a child, can provide an opportunity to talk about feelings that surface in the course of the reading. The adult can reassure the child that the feelings are normal and, when possible, can suggest positive ways to respond to trying situations. Cassie’s problems are not trivial, but the support and help of her parents allow her to achieve some mastery over particular difficulties as they arise.

Cassie’s story shows a traditional family, with parents who are there with her through most of her health crises. Their availability and understanding promote positive thinking. In cases where parents are not available, or where circumstances make coping difficult for the parent(s), children need the support of teachers, health care providers and members of the extended family. Teachers can be especially helpful, since they may be the first to be aware of emotional, social and academic problems arising from frequent school absences. In Puzzles, the author has included the most typical physical and emotional problems of sickle cell disease. Cassie’s situation may be different from the reader’s. Not all families have the same resources. Many children with sickle cell disease have more serious physical and emotional problems, and some have fewer. Nonetheless, both the story and the discussion below can suggest helpful ways of communicating.

Fatigue and Pain. Cassie’s complaints of being tired and having aches and pains are the most common complaints of children with sickle cell disease. Although often vague, these are real physical symptoms. Playmates and adults may discount them because they are also common among healthy children who are bored or disinterested. It is normal for the sickle cell child to feel anger and frustration at being different and unable to keep up physically with friends and classmates.

Small Stature. The growth of children with sickle cell disease may be delayed, making them smaller than others the same age and frequent targets of

unkind remarks. Teasing and frequent absences from school can cause loss of self-esteem and exclusion from group activities by other children. Cassie deals with Martin by ignoring him, which is often the best way to discourage teasing. However, she does not ignore her own feelings. She recognizes that she is angry. But instead of dwelling on her anger, she focuses her attention on her science project, which makes her feel good.

Myths. Children hear many warnings about contagious diseases in television advertising, in the movies and at school. It is natural for Martin to think Cassie’s disease is contagious. This misunderstanding can cause children to avoid the child with sickle cell disease, thus increasing her isolation. Cassie is appropriately angry when Martin teases her, and she speaks out in a helpful way. She tells Martin she is angry and also corrects his misunderstanding. It was helpful for Cassie to know some basic facts about her illness and also to feel comfortable telling her friend that he hurt her feelings.

Disruption of Routine. The chronic and unpredictable nature of sickle cell disease often interferes with planned activities. Cassie’s trip is ruined because of fever. Fever is a sign of infection, a leading cause of death in sickle cell children. It may be hard for the child with sickle cell disease to understand the seriousness of fever, especially because parental reaction to fever in an unaffected sibling is very different. Cassie is angry and sad because she cannot go to Atlanta. Her mother is firm about the need to go to the clinic, but she acknowledges Cassie’s anger and the unfairness of the situation.

Trait Vs. Disease. Sickle cell trait occurs in one out of every ten African-Americans. Sickle cell trait is not the disease. It can never "turn into" the disease.

The Sickled Cell. Cassie is not too young to learn about the cause of her symptoms. With the microscope, she can see the "banana-shaped" cells and compare them to normal blood cells. The misshapen cells are not as flexible as normal cells and tend to clog small blood vessels. The clogging is the cause of pain associated with sickle cell disease. Dr. Lewis recognizes that information about her illness can help Cassie deal with her frustration.

Coping. The excruciating pain events of sickle cell disease can be terrifying to a child. The child has little control over these events and may feel hopeless or depressed. The worse the pain, the more negative the feelings. In the face of the severity of this problem, it is a challenge for a family to promote positive thinking, and it is not always possible. Cassie’s parents encourage her to succeed by being flexible and finding ways to make alternative plans when necessary. By focusing on what Cassie "can do," they suggest an alternative to her feelings of defeat and show a more hopeful way of coping.

In Puzzles, Cassie’s parents and doctor show ways to listen to, nurture and encourage children with chronic disease to do the best that they can.

Walter Elwood Brandon, the Co-founder of the Sickle Cell Genetic Djsease Council I SEPA, now known as The Sickle Cell Disease Association of America/ Philadelphia-Delaware Valley, has survived the trauma of living with Sickle Cell Disease for over half a century. Would you have been able to endure what this man has endured since childhood?

· The sole survivor of four siblings suffering with Sickle Cell Disease, all afflicted at a very young age.

· Embattled by childhood experiences of poverty and family discord created by exorbitant medical bills and the stress of all four children, ill simultaneously, Walter has triumphed over his circumstances to become a loving provider and source of strength and inspiration to his immediate family.

· Walter is beloved and respected by all who are privileged to know him, especially his extended family members of the Sickle Cell Disease Association which he heads in Philadelphia, and by the tenants in the building that houses the Association.

It is awesome where Walter Brandon is today! Here with us to write and talk about his experiences in an insightful, concemed manner and to coin a phrase, "still, he rises to the occasion." In his book and speeches, he seeks to positively impact the lives of other individuals afflicted with the disease and their families by sharing his first hand knowledge and experiences. Walter makes you feel as though you were there along with him, living through the persona! trials, tragedies, loves and victories. He is truly a remarkable and inspiring person. His book is an excellent study for healthcare professionals, social workers, Sickle Cell patients and family members as well as for teaching physicians.

For additional information or orders call ,(215) 471-8686 or fax order to (215) 471-7441. The cost is $10.00

Address: Sickle Cell Disease Association of America Philadelphia/ Delaware Valley Chapter 4601 MARKET STREET, PHILADELPHIA, PA. 19139