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childhood disrupted: Disease causes excruciating vomiting
By Michael Kane/ Staff Writer
Thursday, September 9, 2004
MAYNARD - It is an oft unrecognized yet life-altering disease. For an
8-year-old child who loves soccer and animals, it interrupts school, visits
to friend's houses and family vacations. While not fatal itself,
aftereffects of an episode include severe dehydration and can cause death or
serious harm.
It is called cyclic vomiting syndrome. While acknowledging it is an
uncomfortable subject, one Maynard family hopes by calling attention to
their struggle others suffering from the often misdiagnosed problem can seek
help.
"There are a lot of people with this syndrome who don't know it," Maynard
resident Ellen Ineson said. Her daughter Megan, one of twins, was diagnosed
with the disease in 2002 after several years seeking help.
Read
more...
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Cyclic Vomiting Syndrome (CVS) is an unexplained
functional digestive disorder characterized by recurrent, prolonged attacks
of severe nausea, vomiting and abdominal pain resulting in decreased quality
of life for both children & adults. Largely overlooked until about 10 years
ago, millions of people worldwide suffer from this debilitating syndrome,
while the clinical community remains disturbingly unaware. In fact, as
doctors are increasingly educated about CVS, the number of US patients
diagnosed with this syndrome is climbing at a staggering rate.
Studies in the UK and Australia have shown that 2% of school age children
suffer from CVS. However, CVS can strike in infancy, childhood or
adulthood. In some patients CVS is frequent or severe enough to be
disabling. Because the condition is often not diagnosed for a substantial
amount of time, many sufferers live in isolation, frustrated and desperate
for help in controlling their symptoms.
CVS isn't caused by "something you ate", it isn't repeated bouts of the
"flu" or other infections. The cause of CVS hasn't been isolated yet, but
there are qualified professionals who can accurately diagnose and treat CVS.
You and your family can find relief and gain control of your life again.
The Cyclic Vomiting Syndrome
Association is a volunteer organization serving the needs of CVS
patients worldwide, their families, and the growing medical community
studying CVS. CVSA has grown from a handful of interested parents and
professionals in 1993 into a network that includes 37
medical advisors over 90 volunteers serving medical professionals and
patients in the U.S. & Canada as well as over in 30 other countries worldwide.
We communicate with two other associations (Australia & and
UK).
There is no cure for CVS, but at least four promising research initiatives
are underway – a DNA-based project, one centered on the stress-releasing
response in the hypothalamus, one measuring autonomic functions as markers
of susceptibility to CVS, and a study in which the brains of CVS sufferers
are imaged while they are in episode to pinpoint areas of disordered
activity.
Cyclic Vomiting Syndrome is sometimes called "abdominal migraine," "migraine
variant," or sometimes inaccurately diagnosed as any of a number of
functional gastrointestinal or psychological disorders. CVS is closely
related to a host of vomiting illnesses and abdominal and metabolic
disorders. Any advances made in research for CVS may well produce further
valuable information that could lead to improvements in diagnosis, treatment
and even a cure for these assorted diseases.
As a volunteer driven non-profit organization we are very proud that 93% of
our funds go directly toward our advocacy of research and our education and
support programs. Most of our volunteers either have CVS themselves or have
a child or children with CVS.
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