Lone Hummelshøj,
Professor Giorgio Vittori, and Jacqueline Veit
make history at the Italian Endometriosis Congress,
22 - 25 June 2005 |
Professor
Giorgio Vittori (Rome, Italy), Jacqueline Veit
(president of Associazione Italiana Endometriosi,
and EEA co-founder) and Lone Hummelshoj (EEA
co-founder and facilitator) proved to be a winning
trio at the Italian-led "Endometriosis:
a social disease" conference, which took
place in Rome on 22 - 25 June 2005.
This was certainly not just one of the many
conferences we are used to taking part in. Something
different occurred: for the first time gynaecologists,
surgeons, psychologists, edpidemiologists, legislators,
journalists and women with endometriosis all
got together to focus on the disease as a social
issue, not only as a medical one.
Furthermore, the issue of endometriosis as
a social disease was highlighted not just at
the congress, but in conjunction with a series
of parallel TV and radio interviews, in which
Professor Vittori and Jacqueline Veit explained
the issues and challenges surrounding the disease
to the general public.
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Highly
respected practitioners took part in the Congress
enabling endometriosis to be addressed from
different perspectives (immunology, endocrinology,
genetics, nanotechnologies etc.), as well live
surgery sessions.
In addition to describing
some of the many activities of the Associazione
Italiana Endometriosi (AIE), Jacqueline Veit
was give the honour to address the audience
as a key note speaker at the Opening Ceremony
to explain the patient’s point of view,
underlining the psychological and emotional
pressure women with endometriosis are confronted
with, and she reminded practitioners
to:
- carefully listen to their
patients;
- provide accurate information
on the disease so that women can make informed
decisions and have realistic expectations;
- adopt a multi-disciplinary
approach to a disease which does not only
have a gynecological impact;
- support the requests for
economic support to help women and their families
cover health expenses;
- support the request
for legislative commitment to promote research.
On the last day of the conference,
a broad panel was assembled, consisting of representatives
from the Ministry of Health and Ministry of
Equal Rights, the Health Commission of both
Houses, an MP and an MEP who signed the Written
Declaration on Endometriosis, Lazio Region,
the Province of Roma, the City of Roma, the
Society for Patients’ Rights, the Associazione
Italiana Endometriosi, the European Endometriosis
Alliance, journalists, and representatives of
gynaecologists and GP associations.
On this occasion, Lone Hummelshoj acted as spokesperson
for the European Endometriosis Alliance and
reminded the audience that countries such as
Denmark has already recognised endometriosis
as a disease that requires specialist care,
and where National Institute of Health guidelines
have been in place since 2002, which gives women
the right to seek treatment at one of two national,
specialist centres for endometriosis.
What's more, she had the opportunity to announce
the good news that 266 members of the European
Parliament has signed the Written Declaration
on Endometriosis, which is not only the highest
number of signatures ever collected for a health
issue, but is also a stunning example of what
is achievable when physicians and women with
endometriosis work together. The first significant
result of the joint activities of the European
Endometriosis Alliance!
Professor Vittori concluded the morning's panel
session, which was hosted by Italian TV presenter,
M Mirabella, to formally request that endometriosis
is included among the social diseases was made
during an emblematic ceremony which highlighted
the significance of the issue.
After a delicious buffet lunch, shared by both
patients and physicians, the afternoon was dedicated
to women with endometriosis. In co-operation
with the Associazione Italiana Endometriosi,
10 expert gynecologists offered their time for
free consultations.
The patient was truly the focus of this conference,
which represents yet another important step
towards raising awareness in Italy. And, very
timely, on 28 June 2005, the Italian
Senate voted in favour of the first act of the
bill that will recognise endometriosis as a
social disease!
It must be said that the Associazione Italiana
Endometriosi have certainly achieved a great
deal in only six years! Founded in 1999, the
Association has filled an enormous gap, as before
that there was absolutely no support or information
available for Italian women with endometriosis.
Taking endometriosis to the Italian parliament,
and the many other results achieved so far in
Italy have no doubt taken a great deal of work
and time to accomplish. A lot of credit must
be given to the Italian Association's very determined
and persistent front woman, Jacqueline Veit,
who has been the driving force behind all of
this. Jacqueline, co-founder and president of
the AIE, has been working with women with endometriosis
for 8 years now, and her and her team should
be congratulated, not just for the results they
are getting, but also for the professional way
in which they work to improve the lives of women
with endometriosis.
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