The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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The Rosa Gallo Foundation

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Google 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.