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Coping and support
By Mayo Clinic staffBecause treatment options have improved, most people with primary immunodeficiency can go to school and work like everyone else. Still, you may feel as if no one understands what it's like to live with this chronic illness and the threat of serious infections. Talking to someone else who faces the same daily challenges may be helpful.
Ask your doctor if there are support groups in the area for people with primary immunodeficiency, or for parents of children with the disease. The Primary Immunodeficiency Resource Center of the Jeffrey Modell Foundation offers online message boards on its website where you can connect with others coping with primary immunodeficiency.
The Immune Deficiency Foundation (IDF) has a peer support program, as well as information on day-to-day living with primary immunodeficiency. For example, the IDF has a guide that you can download for school personnel so that they can better understand your child's condition.
- Primary immunodeficiency. Eunice Kennedy Shriver National Institute of Child Health and Human Development. http://www.nichd.nih.gov/publications/pubs/primary_immuno.cfm. Accessed June 12, 2011.
- Specific medical therapy. In: Blaese R, et al. IDF Patient and Family Handbook for Primary Immunodeficiency Diseases. 4th ed. Towson, Md.: Immune Deficiency Foundation; 2007. http://www.primaryimmune.org/publications/book_pats/patient_and_family_handbook_4th.pdf. Accessed June 12, 2011.
- Primary immunodeficiency diseases. American Academy of Allergy, Asthma and Immunology. http://www.aaaai.org/patients/topicofthemonth/0407/. Accessed June 12, 2011.
- Immunodeficiency disorders. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merckmanuals.com/professional/print/sec13/ch164/ch164a.html. Accessed June 12, 2011.
- Fischer A, et al. Gene therapy for primary adaptive immune deficiencies. Journal of Allergy and Clinical Immunology. 2011;127:1356.
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