IDF Patient & Family Handbook for Primary Immunodeficiency ... - IDFA

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144 Reference Reference Genetic Issues Genetic Alliance www.geneticalliance.org (800) 336-GENE The Genetic Alliance is an international coalition of families, health professionals, and genetic support organizations that provide information, support and advocacy to those affected by genetic conditions, including primary immune deficiencies. Gene Tests www.geneclinics.org At this site one can enter a diagnosis and pull up scholarly articles about many primary immunodeficiency diseases including CVID. Human Genome Project: Ethical, Legal, and Social Issues (ELSI) www.ornl.gov/hgmis/elsi/elsi.html The ELSI division of the Human Genome Project is the world’s largest bioethics program devoted to studying these issues related to the availability of genetic information. The Web site contains information on genetic testing with regard to privacy and legislation, gene patenting, gene therapy and genetics used in the courtroom. Publications Immune Deficiency Foundation Immune Deficiency Foundation. Patient and Family Handbook for Primary Immunodeficiency Diseases, 4th edition, 2007. 3rd edition available in Spanish. Immune Deficiency Foundation. LeBien, Sara. Our Immune System. 1990. Also available in Spanish. Immune Deficiency Foundation. A Guide for School Personnel on Primary Immune Deficiency Diseases, 2005. Immune Deficiency Foundation. Diagnostic and Clinical Care Guidelines for Primary Immunodeficiency Diseases, 2006. Immune Deficiency Foundation. IDF Guide for Nurses on Immunoglobulin Therapy for Primary Immunodeficiency Diseases, 2007. Other Publications and Resources General Information on Immunology and Primary Immune Deficiencies AAAAI. IVIG Toolkit. www.aaaai.org/members/resources/ initiatives/ivig.stm National Institutes of Health, National Institute of Allergy and Infectious Diseases. Primary Immune Deficiency Diseases: Discovering Causes; Improving Lives; Working Toward A Cure. 1998. U.S. Department of Health and Human Services. Understanding the Immune System. 1990. NIH Publication No. 90-529. National Institute of Child Health and Human Development. When the Body’s Defenses are Missing: Primary Immunodeficiency. 1999. U.S. National Institute of Allergy and Infectious Diseases. The Immune System: How it Works. NIH Publication No. 92-3229. Health Care Information Cafferky, Michael E. Managed Care and You: The Consumer Guide to Managing Your Health Care. Practice Management Information. 1995. Foote, Patricia. How are You? Manage Your Own Medical Journey. Medical Journeys Network. 1998. Kongstvedt, Peter R. Managed Care: What it is & How it Works. Jones & Bartlett Publishers, Inc. 2003. Marckinko, David E., Hetico, Hope R. Dictionary of Health Insurance and Managed Care. Springer Publishing Co., Inc. 2006. Patient Advocate Foundation. The Managed Care Answer Guide. 1997.
Reference 145 Books For Youth Balkwil, Fran. Cell Wars. Lerner Publishing Group. 1992. (Ages 12 and up) Balkwill, Frances R. Amazing Schemes within Your Genes. Lerner Publishing Group. 1993. (Ages 8–11) Balkwill, Frances R. DNA Is Here to Stay. Carolrhoda Books. 1994. (Ages 9–12) Baxter Healthcare Corporation. My IVIG Book Kit. (Ages 3–10) Berger, Melvin. Germs Make Me Sick! Harper Trophy. 1995. (Ages 4–8) Birch, Beverly. Pasteur’s Fight Against Microbes. Barron’s Educational Series, Inc., New York, NY. 1996. (Ages 9–12) Bostrom, Kathleen Long. When Pete’s Dad Got Sick: A Book about Chronic Illness. Zonderkidz Publishing. 2004. (Ages 4–8) Cole, Joanna. The Magic School Bus: Inside the Human Body. Scholastic, Inc., New York, NY. 1989. (Ages 6–9) Duncan, Debbie. When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children. Rayne Productions, Inc. 1995. (Ages 4–7) Gelman, Rita Golden. Body Battles. Scholastic, Inc. 1992. (Ages 8–12) Howard Hughes Medical Institutes, Office of Communications. Arousing the Fury of the Immune System. www.hhmi.org. 1998. (Young Adult) Huegel, Kelly. Young People and Chronic Illness. Free Spirit Publishing, Inc. 1998. (Young Adult) Libal, Autumn. Chained: Youth with Chronic Illness. Mason Crest Publishers. 2004. (Ages 9–12) McGrath, Tom. When You’re Sick or in the Hospital: Healing Help for Kids. Abbey Press. 2002. (Ages 3–11) Mills, Joyce C. Little Tree: A Story for Children with Serious Medical Problems. American Psychological Associates. 2003. (Ages 5–8) Nadler, Beth. The Magic School Bus: Inside Ralphie: A Book About Germs. Scholastic, Inc. 1995. (Ages 6–9) Romanek, Trudee. Achoo!: The Most Interesting Book You’ll Ever Read About Germs. Kids Can Press, Ltd. 2003. (Ages 12 and up) Zoehfeld, Kathleen Weidner. Pooh Plays Doctor. Disney Press. 1999. (Preschool) Books For Parents Barrett-Singer, Alesia T. Coping with Your Child’s Chronic Illness. Robert D. Reed Publishers. 2004. Berends, Polly Berrien, Peck, M. Scott. Whole Child/ Whole Parent. Harper Collins.1997. Bluebond-Langner, Myra. In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child. Princeton University Press. 2000. Leff, Patricia Taner, Walizer, Elaine H. Building the Healing Partnership: Parents, Professionals and Children with Chronic Illness and Disabilities. Brookline Books. 1992. McCollum, Audrey. The Chronically Ill Child: A Guide for Parents and Professionals. Yale University Press. 2001. Stein, Ruth E. K. Caring for Children with Chronic Illness: Issues and Strategies. Springer Publishing Company. 1989. Books For Adults With Chronic Illness Donoghue, Paul J., Siegel, Mary E. Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness. 2nd ed. W.W. Norton & Company. 2000. Pitzele, Sefra Kobrin. We are Not Alone: Learning to Live with Chronic Illness. Workman Publishing Co. 1986. Pitzele, Sefra Kobrin. Finding Joy in Today: Practical Readings for Living with Chronic Illness. Hazelden Information Education. 1999. Selak, Joy H., Overman, Steven S. You Don’t Look Sick! Living Well with Invisible Chronic Illness. The Haworth Press. 2005. Sveilich, Carol. Just Fine: Unmasking Concealed Chronic Illness and Pain. Avid Reader Press. 2004. Wells, Susan Milstrey. A Delicate Balance: Living Successfully with Chronic Illness. Perseus Books. 2000. Medical Textbook and Articles Buckley, R. Primary Immunodeficiency Diseases Due to Defects in Lymphocytes. New England Journal of Medicine, Nov. 2, 2000, Vol. 343, No. 18, pp. 1313-1324. Kirkwood, Evelyn and Lewis, Catriona. Understanding Medical Immunology. 2nd ed., John Wiley and Sons. 1991. Ochs HD., Smith CI, Puck JM. Primary Immunodeficiency Diseases: A Molecular and Genetic Approach. Oxford University Press. 2006. Stiehm ER, Ochs HD, Winkelstein JA. Immunologic Disorders in Infants and Children. W.B. Saunders, 2004.
Page 1 and 2:
Patient & Family Handbook For Prima
Page 3 and 4:
Patient & Family Handbook For Prima
Page 5 and 6:
Patient and Family Handbook i Prefa
Page 7 and 8:
Patient and Family Handbook iii Abo
Page 9 and 10:
The Immune System and Primary Immun
Page 11 and 12:
The Immune System And Primary Immun
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Page 15 and 16:
Page 17 and 18:
Page 19 and 20:
Common Variable Immune Deficiency c
Page 21 and 22:
Common Variable Immune Deficiency 1
Page 23 and 24:
X-Linked Agammaglobulinemia chapter
Page 25 and 26:
X-Linked Agammaglobulinemia 17 Clin
Page 27 and 28:
Selective IgA Deficiency chapter 4
Page 29 and 30:
Selective IgA Deficiency 21 Clinica
Page 31 and 32:
Severe Combined Immunodeficiency ch
Page 33 and 34:
Severe Combined Immunodeficiency 25
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Page 39 and 40:
Chronic Granulomatous Disease 31 De
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Chronic Granulomatous Disease 33 Di
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Chronic Granulomatous Disease 35 Tr
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Wiskott-Aldrich Syndrome 37 Definit
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Wiskott-Aldrich Syndrome 39 Maligna
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Wiskott-Aldrich Syndrome 41 Treatme
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Hyper IgM Syndrome 43 Definition of
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Hyper IgM Syndrome 45 Treatment of
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DiGeorge Syndrome 47 Definition of
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DiGeorge Syndrome 49 Therapy for Di
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IgG Subclass Deficiency and Specifi
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IgG Subclass Deficiency and Specifi
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Ataxia Telangiectasia 55 Definition
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Ataxia Telangiectasia 57 General Tr
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Hyper IgE Syndrome 59 Definition of
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Hyper IgE Syndrome 61 Inheritance o
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Complement Deficiencies 63 Definiti
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Complement Deficiencies 65 Treatmen
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Other Important Primary Immunodefic
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Other Important Primary Immunodefic
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Inheritance chapter 15 Many disease
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Inheritance 73 Types of Inheritance
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Inheritance 75 Types of Inheritance
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Inheritance 77 Reproductive Options
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Laboratory Tests chapter 16 Laborat
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Laboratory Tests 81 Major Categorie
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Laboratory Tests 83 Summary Laborat
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General Care 85 General Health Meas
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General Care 87 Exercise Participat
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General Care 89 General Care During
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General Care 91 General Care During
Page 101 and 102: Specific Medical Therapy 93 Introdu
Page 103 and 104: Specific Medical Therapy 95 General
Page 105 and 106: Specific Medical Therapy 97 Hematop
Page 107 and 108: Specific Medical Therapy 99 Granulo
Page 109 and 110: Specific Medical Therapy 101 PEG-AD
Page 111 and 112: Specific Medical Therapy 103 Gene T
Page 113 and 114: Infants and Children with Primary I
Page 119 and 120: Adolescents with Primary Immunodefi
Page 127 and 128: Adults with Primary Immunodeficienc
Page 133 and 134: Health Insurance chapter 22 Having
Page 135 and 136: Health Insurance 127 Who Are the
Page 141 and 142: Health Insurance 133 LIFETIME MAXIM
Page 143 and 144: Glossary 135 Gamma globulins: The p
Page 145 and 146: Glossary 137 Sepsis: An infection o
Page 147 and 148: Reference 139 NIH Clinical Trials w
Page 149 and 150: Reference 141 International Patient
Page 151: Reference 143 Manufacturing Compani
Page 156: This publication has been made poss
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