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

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iv Patient and Family Handbook Contents Chapter 1 The Immune System and Primary Immunodeficiency Diseases . . . . . . . . . . . . . . . . .1 Chapter 2 Common Variable Immune Deficiency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11 Chapter 3 X-Linked Agammaglobulinemia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15 Chapter 4 Selective IgA Deficiency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .19 Chapter 5 Severe Combined Immune Deficiency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .23 Chapter 6 Chronic Granulomatous Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .30 Chapter 7 Wiskott-Aldrich Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .36 Chapter 8 Hyper IgM Syndromes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .42 Chapter 9 DiGeorge Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .46 Chapter 10 IgG Subclass Deficiency and Specific Antibody Deficiency . . . . . . . . . . . . . . . . . . . .50 Chapter 11 Ataxia Telangiectasia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .54 Chapter 12 Hyper IgE Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .58 Chapter 13 Complement Deficiencies. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .62 Chapter 14 Other Important Primary Immunodeficiency Diseases . . . . . . . . . . . . . . . . . . . . . . . .66 Chapter 15 Inheritance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .71 Chapter 16 Laboratory Tests . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .79 Chapter 17 General Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .84 Chapter 18 Specific Medical Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .92 Chapter 19 Infants and Children with Primary Immunodeficiency Diseases . . . . . . . . . . . . . . . .104 Chapter 20 Adolescents with Primary Immunodeficiency Diseases . . . . . . . . . . . . . . . . . . . . . .111 Chapter 21 Adults with Primary Immunodeficiency Diseases . . . . . . . . . . . . . . . . . . . . . . . . . .119 Chapter 22 Health Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .125 Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .134 Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .138
The Immune System and Primary Immunodeficiency Diseases chapter 1 The immune system is composed of a variety of different cell types and proteins. Each component performs a special task aimed at recognizing and/or reacting against foreign material.
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: Patient and Family Handbook iii Abo
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
Page 61 and 62:
IgG Subclass Deficiency and Specifi
Page 63 and 64:
Ataxia Telangiectasia 55 Definition
Page 65 and 66:
Ataxia Telangiectasia 57 General Tr
Page 67 and 68:
Hyper IgE Syndrome 59 Definition of
Page 69 and 70:
Hyper IgE Syndrome 61 Inheritance o
Page 71 and 72:
Complement Deficiencies 63 Definiti
Page 73 and 74:
Complement Deficiencies 65 Treatmen
Page 75 and 76:
Other Important Primary Immunodefic
Page 77 and 78:
Other Important Primary Immunodefic
Page 79 and 80:
Inheritance chapter 15 Many disease
Page 81 and 82:
Inheritance 73 Types of Inheritance
Page 83 and 84:
Inheritance 75 Types of Inheritance
Page 85 and 86:
Inheritance 77 Reproductive Options
Page 87 and 88:
Laboratory Tests chapter 16 Laborat
Page 89 and 90:
Laboratory Tests 81 Major Categorie
Page 91 and 92:
Laboratory Tests 83 Summary Laborat
Page 93 and 94:
General Care 85 General Health Meas
Page 95 and 96:
General Care 87 Exercise Participat
Page 97 and 98:
General Care 89 General Care During
Page 99 and 100:
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 115 and 116:
Page 117 and 118:
Page 119 and 120:
Adolescents with Primary Immunodefi
Page 121 and 122:
Page 123 and 124:
Page 125 and 126:
Page 127 and 128:
Adults with Primary Immunodeficienc
Page 129 and 130:
Page 131 and 132:
Page 133 and 134:
Health Insurance chapter 22 Having
Page 135 and 136:
Health Insurance 127 Who Are the
Page 137 and 138:
Page 139 and 140:
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 and 152:
Reference 143 Manufacturing Compani
Page 153 and 154:
Reference 145 Books For Youth Balkw
Page 156:
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