The Rosa Gallo Foundation
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Translation from The Rosa Gallo Website
The Foundation Rosa Gallo was born
to continue the long and courageous journey undertaken
by Rosa Gallo, a girl of Salerno, ended prematurely
21 years after a transplant multiorgano (intestine,
liver and pancreas) for a disease called familial adenomatous
polyposis (FAP ).
As you can understand from the name,
this is a hereditary disease caused alteration of a
gene (called APC), normally deputy to inhibit the formation
of adenomatous polyps. Because of this genetic anomaly,
during puberty, but sometimes even during childhood,
many polyps (even more than a thousand) grow along the
terminal intestine: the colon. If untreated, these polyps
be inevitably towards a neoplastic degeneration, namely
turning into cancer, an average of the first 40 years
of age. The disease is spread worldwide, affecting equally
in the two sexes and afflicts about 1 person every 15000.
If diagnosed in time, patients should
be subjected to intervention removal of the entire colon.
Unfortunately, even in this case, the possibility of
developing other cancers along the gastrointestinal
tract remains much higher than the general population,
which required a very strict control and for life.
There are also, as in the case of
Rosa, other events dangerous for these patients: cancer
desmoidi. In 12-20% of patients during illness, develop
cancer of the masses in the abdominal wall or within
dell'addome. These cancers can reach desmoidi, also,
over 20 cm in diameter and compress or incorporate the
intestinal loops (causing bowel obstruction), ureteri
(by altering renal function) or the great vessels that
irrorano intestine, causing a slow, but inevitable suffering
ischaemic. Unfortunately, in the case of Rosa, these
events coexisted, making it necessary, after a series
of surgical mutilations, a transplant multiorgano. After
more than 1 year of waiting for a compatible donor,
has finally received intestine, liver and pancreas in
the University Clinic in Innsbruck and, after a first
period which left much hope, has unfortunately been
rejected with ominous outcome.
Unfortunately, even if you can make
diagnosis with a simple drawing of blood, much remains
to be done for these patients who do not have a true
point of support and reference for the treatment of
this disease.
For the prevention
and treatment of familial adenomatous polyposis "Rosa
Gallo Foundation proposes the following objectives:
Information for
relatives and early detection:
all people who develop cancer of the colon-rectum before
40 years should be subjected to tests to assess the
presence of anomalies in the APC gene and, if present,
even other family members must do the same surveys.
Support:
FAP patients should be followed for life, sometimes
age children. This necessitates the presence of professionals
who can help us understand the various moments of therapy
and controls. The support of pediatricians, surgeons,
geneticists,, gastroenterologi, psychologists, stomaterapisti,
that is, in other words, a multidisciplinary work, behind
a winning approach towards the disease.
Information for
doctors:
distribution of information material about the disease,
its transmissibility documented genetic diagnostic investigations
and to recommend to patients. Creation of "Care
Centres at hospitals where national reference seek advice
and / or target patients.
Search:
is absolutely necessary to create a protocol for 'inclusion
of patients with cancer desmoidi in prospective studies
coordinated the Organizational Structure Simple Surgery
Colo-Proctologica of Verona, indispensable reference
for an efficient search.
Surgical therapy:
the various surgical methods for "familial adenomatous
polyposis" and other chronic inflammatory intestinal
diseases provide the same techniques. It must, therefore,
seek new solutions that improve the welfare and quality
of life of these particular patients.
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