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FAQ
Frequently Asked Questions 1. Can you catch a Primary Immune Deficiency (PI)? No, you cannot catch Primary Immune Deficiency. This disorder is usually inherited, meaning that a person is born with Primary Immune Deficiency (PI). Like anything that is inherited, PI diseases are the result of altered or mutated genes that can be passed on from parent to child or can arise as genes are being copied. PI is carried through the genes, you cannot “catch it” like a cold.1 PI affects the balance between components of the immune system and prevents the body from responding effectively against invading pathogens. It is also possible for a person to develop or acquire an immunodeficiency disorder during one's lifetime, which can be the result of immune system damage.1 A person with PI who has an infection such as pneumonia may pass the infection to an otherwise healthy person, but the immunodeficiency disorder cannot be passed on to another person. 2. Can people with PI perform the same activities as others? Yes, children usually can attend school regularly, play with friends, and take part in sports. Most adults with PI lead productive lives in their communities.1 Preparation for school must be planned in advance. Parents should work with their child's school to make any necessary arrangements, such as preparing special meals, providing hall passes, making time for doctor visits, and meeting special requirements for immunizations.2 (For more information on immunizations, see Frequently Asked Question 3.) Both parents and the school nurse should keep the telephone number of the child's physician, as well as a list of phone numbers to call in case of illness. Helping the child live and develop like other children can ease the transition to school. 3. What vaccines cannot be given to children with PI? Children with PI diseases, especially those with defective T cells, X-linked agammaglobulinemia, ataxia telangiectasia, SCID, and Wiskott Aldrich Syndrome should not receive live vaccines, such as measles, mumps, rotavirus, BCG, and chicken pox (varicella) vaccines.1-2 The use of live polio vaccine in the United States has been discontinued and infants are now routinely vaccinated with the killed polio vaccine.2 Only killed tetanus and diphtheria vaccines are recommended for all children. For more information, consult you health-care provider. 4. Does immunoglobulin interact with other drugs? Drug interactions have not been evaluated. It is recommended that IVIG be administered separately from other drugs or medications which you may be receiving.3 The antibodies in immune globulin preparations may interfere with the responses to live vaccines such as those for measles mumps and rubella. The physician giving immunizations should be informed of any recent therapy with IVIG so that appropriate precautions can be taken.3 (For more information on immunizations, see Frequently Asked Question 3). 5. Is there a cure? For several life threatening immune deficiencies, bone marrow transplants or stem cell transplantation offer the chance of a dramatic, complete and permanent cure. Unfortunately, bone marrow transplants do not work for everyone. To be successful, the transplant needs to come from a donor whose body tissues are a close biological “match.” 1 Intravenous immunoglobulin (IVIG) therapy temporarily replaces missing antibodies and helps protect against infections. This infusion of antibodies must be given approximately every three to four weeks to maintain adequate levels of antibodies.2 There are several different immunoglobulin products licensed for intravenous use. There are some differences in the formulations that may make one particular preparation more suitable for a given person. As always, your doctor is the best source of information as to which formulation of IVIG is best for you. Gene therapy attempts to cure disease by inserting a healthy version of a missing or malfunctioning gene into a cell to restore normal function. Currently, gene therapy remains strictly experimental, and not yet used routinely for therapy.1 Glossary Terms:Gene: A unit of hereditary information that occupies a fixed position (locus) on a chromosome. Genes are formed from DNA and are responsible for the inherited characteristics that distinguish one individual from another. Immune system: A complex system comprised of many organs and cells that defends the body against viruses, bacteria and other foreign substances. Immunoglobulins (Immune globulins): Proteins produced by the immune system, many of which act as antibodies.
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