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

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ii Patient and Family Handbook The Immune Deficiency Foundation The Immune Deficiency Foundation (IDF) was founded in 1980 by parents of children with primary immunodefiency diseases and their physicians. At that time, there were no educational materials or programs for patients and no public advocacy initiatives. One of the greatest challenges faced by people who find themselves or their children diagnosed with a primary immunodeficiency is getting the right information at the right time. To fill this void, one of the most important publications developed by IDF is the Patient & Family Handbook and we are proud to offer this fourth edition. We know that this book has served as the basis of understanding primary immunodeficiency diseases for over two decades and we are pleased to present this updated version. A few years ago, Kinsey Moore, then an eighth grader, had the assignment of writing an essay on what book she would choose to be. Kinsey wrote: “The book I would want to be turned into is the Immune Deficiency Foundation (IDF) Family Handbook. When I was born, I was very ill and almost died several times. In all of my baby pictures, I have cords and wires connected to me. One time when I was in the hospital and I had a life-threatening infection for the third time that month, my mom walked into the library and saw a little blue and white book poking off the shelf. It was the IDF’s family handbook. Everything in that book applied to me. When my mom told the doctors, they did not believe her. After two years of going to different doctors, I was finally diagnosed when I was four. This book saved my life. I would want to become this book so I could save more people in my situation. My family knows what it is like to feel lost and not know whether I would live till tomorrow, but this book gave us hope.” We hope this handbook gives you hope, knowledge and empowerment to help cope with the challenges of living with a primary immunodeficiency disease. As a patient-focused organization dedicated to our community, we encourage you to contact IDF to help meet your needs. Whether you want to talk to a peer support volunteer, need assistance from a patient advocate or want to attend an educational meeting, know that IDF is the place to turn for help and information. Marcia Boyle President & Founder Immune Deficiency Foundation
Patient and Family Handbook iii About the Immune Deficiency Foundation The Immune Deficiency Foundation, founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis and treatment of patients with primary immunodeficiency diseases through research, education and advocacy. Educational Publications • Patient & Family Handbook for Primary Immunodeficiency Diseases • Our Immune System • A Guide for School Personnel on Primary Immune Deficiency Diseases • Diagnostic and Clinical Care Guidelines for Primary Immunodeficiency Diseases • IDF Guide for Nurses on Immunoglobulin Therapy for Primary Immunodeficiency Diseases • IDF Advocate—newsletter • Primary Immune Tribune—e-newsletter Services for Patients and Families • Patient Advocacy—inquiries related to diagnosis, treatment, health insurance, peer support and literature requests • IDF Educational Meetings—local and regional patient meetings, national conference • IDF Volunteer Network—Peer Support, Grassroots Advocacy and Fundraising • Student Scholarships—post-secondary education Services for Medical Professionals • Consulting Immunologist Program (877-666-0866) provides physicians with a free consult or second opinion on patients with primary immunodeficiency diseases • LeBien Visiting Professor Program offers Grand Rounds and clinical presentations at medical institutions throughout North America • United States Immunodeficiency Network (USIDNET). IDF administers this National Institute of Health contract for research and mentoring for primary immunodeficiency diseases • National Registries of Primary Immunodeficiency Diseases Public Policy Initiatives • Advocacy efforts on public policy issues at national and state levels by monitoring issues that are critical to patients • IDF Grassroots Advocacy Program mobilizes the primary immunodeficiency community to contact their government representatives to promote healthcare legislation that will positively affect the community. • Advocacy for increased funding for research on primary immunodeficiency diseases • Work with other organizations on quality of care initiatives for users of plasma products www.primaryimmune.org 800-296-4433
Page 1 and 2: Patient & Family Handbook For Prima
Page 3 and 4: Patient & Family Handbook For Prima
Page 5: Patient and Family Handbook i Prefa
Page 9 and 10: The Immune System and Primary Immun
Page 11 and 12: The Immune System And Primary Immun
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
Page 39 and 40: Chronic Granulomatous Disease 31 De
Page 41 and 42: Chronic Granulomatous Disease 33 Di
Page 43 and 44: Chronic Granulomatous Disease 35 Tr
Page 45 and 46: Wiskott-Aldrich Syndrome 37 Definit
Page 47 and 48: Wiskott-Aldrich Syndrome 39 Maligna
Page 49 and 50: Wiskott-Aldrich Syndrome 41 Treatme
Page 51 and 52: Hyper IgM Syndrome 43 Definition of
Page 53 and 54: Hyper IgM Syndrome 45 Treatment of
Page 55 and 56: DiGeorge Syndrome 47 Definition of
Page 57 and 58:
DiGeorge Syndrome 49 Therapy for Di
Page 59 and 60:
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
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Specific Medical Therapy 93 Introdu
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Specific Medical Therapy 95 General
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Specific Medical Therapy 97 Hematop
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Specific Medical Therapy 99 Granulo
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Specific Medical Therapy 101 PEG-AD
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Specific Medical Therapy 103 Gene T
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Infants and Children with Primary I
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Adolescents with Primary Immunodefi
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Adults with Primary Immunodeficienc
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Health Insurance chapter 22 Having
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Health Insurance 127 Who Are the
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Page 139 and 140:
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Health Insurance 133 LIFETIME MAXIM
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Glossary 135 Gamma globulins: The p
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Glossary 137 Sepsis: An infection o
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Reference 139 NIH Clinical Trials w
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Reference 141 International Patient
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Reference 143 Manufacturing Compani
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Reference 145 Books For Youth Balkw
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