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SCID, Severe Combined Immunodeficiency,
is a primary immune deficiency. The defining characteristic
is usually a severe defect in both the T- & B-lymphocyte
systems. This usually results in the onset of one or more
serious infections within the first few months of life.
These infections are usually serious, and may even be
life threatening, they may include pneumonia, meningitis
or bloodstream infections.
"This once-fatal disease should be
now seen as a pediatric emergency, a condition that needs
immediate diagnosis and treatment. says Dr. Rebecca Buckley,
chief of Duke's division of pediatric allergy and immunology.
"Early diagnosis of SCID is rare because doctors
do not routinely perform a test in newborns to count white
blood cells. Such a blood test could pick up children
with SCID as well as those with other serious immune deficiencies
that would not be apparent until the child developed an
infection. A simple blood test could allow us to treat,
and most likely cure, SCID in an infant at a reasonable
cost. If found later, less effective treatment can run
into the millions." Buckley states, "What we're
saying is that essentially every baby with SCID could
be cured if diagnosed early enough. SCID should be considered
a pediatric emergency."
SCID is often called "bubble boy disease".
SCID became widely known during the 1970's and 80's, when
the world learned of David Vetter, a boy with X-linked
SCID, who lived for 12 years in a plastic, germ-free bubble.
There are several forms of SCID. The most common type
is linked to the X chromosome, making this form affect
only males. Other forms of SCID usually follow an autosomal
recessive inheritance pattern or are the result of spontaneous
mutations. One of these other forms is linked to a deficiency
of the enzyme adenosine deaminase (ADA). Other cases of
SCID are caused by a variety of other defects.
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SCID Conference 2008!
It’s been 10 years since the X-SCID
Conference held in Bethesda, Maryland. Now
plans are underway for another conference.
Registration will open at the beginning of
May, but to find out what’s planned
visit the SCID
Conference 2008 website. The SCID Conferences
are for SCID patients and their families.
Sign up for updates or check the site often
for the latest information. Dates and location
have already been announced: July 25th to
27th, 2008 at Wintergreen Resort and Spa in
Wintergreen, Virginia.
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| Intravenous
Immune Globulin (IVIG) Communities Unite to
Pursue Medicare Reform on Behalf of Patients
Galvanized summit group forms to resolve
life-threatening IVIG access issues associated
with Medicare Modernization Act. To ensure
both short-term and longer-term solutions
to reimbursement rates for IVIG, a summit
group for reimbursement reform has been created,
guided by patient insights from the Immune
Deficiency Foundation (IDF), the Jeffrey Modell
Foundation (JMF), and The Neuropathy Association
(TNA).
The Immune Deficiency Foundation public
policy program focus on three main areas:
- Advocating
for a safe and adequate blood supply
- Ensuring access to quality
health care for primary immune deficient
patients
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Increasing funding for medical and scientific
research.
View latest Action
Alerts |
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