|
Frequently Asked Questions
FAQs About Primary Immune Deficiencies
Q. Are primary immune deficiency diseases the same
as AIDS?
A. No. Acquired Immune Deficiency Syndrome (AIDS) is a secondary immune
deficiency caused by the specific viral infection, human immunodeficiency
virus (HIV). Primary immune deficiency diseases are caused by intrinsic
or genetic defects in the immune system. Primary immune deficiency diseases
are not contagious, and do not present any risk to other people.
Q. What is bone marrow transplantation and when is
it successful?
A. Some immune deficient patients benefit from the procedure of bone marrow
transplantation. Bone marrow is removed from the pelvic bones of a healthy
donor and transplanted through a needle into a vein of the immune deficient
individual. The highest success rates are in children under the age of
5 who are relatively free of infections. For more information, refer to
the "Patient and Family Handbook,"
Chapter XIV on Specific Medical Therapy.
Q. What is stem cell transplantation and when is it
used?
A. Stem cell transplantation is a form of treatment for individuals with
T cell defects. Stem cells from the cord blood or peripheral blood of
a normal donor at birth are transplanted to an immune deficient recipient.
It is a highly specialized treatment that can be used to treat some primary
immune deficiency diseases. For more information, refer to the "Patient
and Family Handbook," Chapter XIV on Specific Medical Therapy.
Q. If one family member has a primary immune deficiency
is it likely that other family members will also have it?
A. The risk of having a primary immune deficiency disease is higher in
family members of
an affected patient. This increased risk of primary immune deficiency
depends on the type of primary immune deficiency disease and the manner
in which the genetic defect is inherited. It is most important to identify
the specific genetic defect and that will provide information as to how
the disease is inherited and who else in the family maybe at risk having
the disease; or carrying the gene for the disease. Please read the "Patient
& Family Handbook", Chapter XII on Inheritance, for a more
detailed explanation.
Q. If primary immune deficiency diseases are genetic,
or congenital, why is it that some of these diseases are diagnosed in
adults?
A. It is possible that these defects are present all along, but not diagnosed
due to compensating immune functions that keep serious problems from developing
earlier. It is also possible that there is a slowly deteriorating immune
function, genetically determined, that does not become significant until
later in life.
Q. How long will a primary immunodeficiency disease
stay within a family's gene pool?
A. Genes may be passed on to any of our offspring, but how they are passed
on and to which children depends on the way the gene is inherited and
expressed. Usually, a specific gene is only passed on to some of the children,
but not all. If the gene for a primary immunodeficiency disease is passed
on from parent to child, it may then be passed on from that child to some
of their children, and so on and so on. At each generation, there is some
chance that the gene may be passed on. Please refer to the Genetics
Section of the website for more information.
Q. What is gene therapy and how can it benefit patients
with Primary Immunodeficiency Diseases?
A. Gene therapy is a new technology aimed at replacing or repairing abnormal
disease producing genes in patients with genetic diseases such as primary
immune deficiency diseases. In one form of gene therapy, samples of cells
of the immune system are taken from the patient's blood or bone marrow;
the normal gene is introduced into these cells, the number of cells is
expanded in a laboratory and the cells are given back to the patient.
In another form of gene therapy, the abnormal genes in the patient's cells
are fixed within the cell.
While gene therapy has proven to be successful in two forms of Severe
Combined Immunodeficiency Disease (SCID), serious adverse effects have
been reported in association with gene therapy and it is not yet an available
form of treatment in the United States. Additionally, it is important
to remember that primary immune deficiency disorders that do not have
known genetic defects would not be candidates for gene therapy, if this
ultimately becomes a form of treatment in the future.
Ask IDF
Do you have a question about the Immune Deficiency Foundation
or IDF's programs and services? Are you searching for more information
related to diagnosis, treatment, management, or inheritance of primary
immune deficiency diseases? Do you need advice related to health insurance,
schooling, or employment? Would you like to be connected with others personally
affected by primary immune deficiency diseases?
IDF is here to help! Submit your question to the Immune
Deficiency
Foundation by typing in the box below. Every attempt will be made to
respond
to your question within 10 business days. If you have not received
a
response within this time period, please contact the IDF office at
800-296-4433. Click here to view archived FREQUENTLY
ASKED QUESTIONS.
Physicians may use the form below to access the Consulting
Immunologist Program or call the Consulting Immunologist hotline at
877-666-0866.
Please consult your physician if you any questions
about your health or treatment. Do not use this website for medical emergencies.
If you are experiencing a medical emergency, contact your health care
professional immediately or call 911.
An asterisk (*) identifies each required field.
Sign our Guest Book and begin receiving information
and newsletters from IDF.
|
