Life Management

Autoimmunity in Primary Immunodeficiency
The immune system is a complex set of organs, cells, proteins and other substances that function to prevent infection. Primary immunodeficiency diseases are characterized by abnormalities in specific components of the immune system that lead to an increased susceptibility to infection. Many times, abnormalities in the immune system that lead to primary immunodeficiency diseases also result in immune dysregulation, which is an immune response that is not properly controlled or restrained. This can lead to autoimmunity, one form of immune dysregulation in which the immune response is directed against normal parts of the body such as cells, tissues or organs (called auto-antigens).

Put another way, it is when the immune system attacks the body in which it resides.

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Infants and Children Living with Primary Immunodeficiency Diseases
When a child is diagnosed with a primary immunodeficiency disease, each member of the family begins an unexpected and challenging journey. The whole family must come to terms with the illness and perhaps make major changes in schedules and priorities. As a result, it is a journey that may have unforeseeable turns but also many joys and rewards—a journey that can be meaningful.

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Adolescents Living with Primary Immunodeficiency Diseases
Adolescents diagnosed with a primary immunodeficiency disease and their families face not only the day-to-day challenges of any family, but they also face learning how to manage the effects of a rare and chronic disease while nurturing growth towards adulthood.

Adolescence is a time of great transition cognitively, developmentally and emotionally. When adolescents are diagnosed, they face some unique difficulties, and it is important to help them manage the impact of a primary immunodeficiency disease while striving to achieve the developmental tasks of a teenager.

Although typical adolescent trials may be more stressful and confusing for those living with primary immunodeficiency disease, you and your adolescent can work together to overcome challenges, enjoy this time and prepare for the transition into adulthood.
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Young Adults Living with Primary Immunodeficiency Diseases
Young adulthood is a time of independence and self-exploration when individuals separate from their parents and make life choices about education, career, lifestyle, living environment and peer relationships.

Although the physical signs of primary immunodeficiency diseases often get the most attention, emotional health is just as important. The transition to adulthood is a challenging time for most people, but the potential ramifications of primary immunodeficiency diseases often require some unique life adjustments.

It is important that you, the patient, has the emotional support and skill set required to cope. Everyone experiences the disease differently, and your individual needs and strengths should be taken into consideration. With the support of family and friends, an effective healthcare team and necessary coping skills, you can lead a fulfilling and productive life.

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Adults Living with Primary Immunodeficiency Diseases
Many adults with primary immunodeficiency diseases live full lives. The well-informed patient working with an attentive healthcare team can often pursue a career and live an active, productive life.

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