Because 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 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.
Jul. 30, 2013
- Primary immunodeficiency. Eunice Kennedy Shriver National Institute of Child Health and Human Development. http://www.nichd.nih.gov/publications/pubs/Pages/primary_immuno.aspx. Accessed May 20, 2013.
- Blaese R, et al. Patient and Family Handbook for Primary Immunodeficiency Diseases. 4th ed. Towson, Md.: Immune Deficiency Foundation; 2007. http://primaryimmune.org/about-primary-immunodeficiency-diseases/idf-publications/patient-family-handbook. Accessed May 20, 2013.
- Primary immunodeficiency diseases. American Academy of Allergy, Asthma and Immunology. http://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease.aspx. Accessed May 20, 2013.
- Papadopoulou-Alataki E, et al. Prevention of infection of children and adolescents with primary immunodeficiency disorders. Asian Pacific Journal of Allergy and Immunology. 2012;30:249.
- Pasternak MS. Approach to the adult with recurrent infections. http://www.uptodate.com/home. Accessed May 20, 2013.
- Bonilla FA. Medical management of immune deficiency. http://www.uptodate.com/home. Accessed May 20, 2013.