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Endometriosis is widespread in Italy, just as it
is across Europe and the world. Wherever there are
women, approximately a tenth of them are likely to
experience the symptoms associated with the disease
and thus the many related effects on quality of life
in many diverse ways.
The problem is widespread but the fight against it
is strong – to support women with endometriosis
and those who live with them with the information
and back-up to empower them to love life as any woman.
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Some AIE board members and
volunteers at the World Meeting
Milano, May 2006
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At the forefront of this work is the Associazione Italiana
Endometriosi (AIE), the Italian Endometriosis Association.
There are also several centres of excellence for the
disease here, run by dedicated physicians at the frontiers
of their research field.
It was no accident then that the World
Meeting on Gynaecological Pelvic Pain and Endometriosis
took place in Milan in May 2006. Well known physicians
from the world of endometriosis research were welcomed
by local colleagues to share the outcomes of their most
recent work. The AIE was proud to hold a symposium during
the Meeting – bringing together doctors and patients
from various countries to share and listen in a valuable
exchange among these two groups of experts: patients
and physicians. |
An indication of the high level of interest in endometriosis
and recognition of the disease as a serious problem
for Italian women was demonstrated at the first national
conference organised by the AIE in collaboration with
the Società Italiana Contraccezione (SIC) and
the Società Italiana Menopausa (SIM) in Sardinia.
In June 2006 1000 interested people
met in Cagliari to dedicate 3 days to all stages of
a woman’s life from adolescence to post menopause
and beyond. The first day was dedicated specifically
to endometriosis. Jacqueline Veit, President AIE, shared
news of the AIE’s research into the pelvic pain
of nearly 900 adolescent girls with endometriosis. She
also brought to the attention of the conference the
work of the Association at an international level, especially
across Europe, her message being that women
with endometriosis must have the opportunity to love
life just as much as any woman.
The round table that followed, also
organised by AIE, touched on several vital issues such
at the doctor patient relationship, the effect on quality
of life of endometriosis and a talk on women’s
perceptions of pelvic pain. Various medical experts
also spoke on issues such as endometriosis and cancer,
nutritional aspects of endometriosis management, menopause,
phyto-oestrogens in menopause and post-menopause.
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As we have seen, the AIE is committed to the promotion
of effective medical research. This commitment is
fundamental to the other aims of not only supporting
the women and their families, but also supporting
health professionals and the wider community in general
to become more aware of and to live well with the
disease. For this reason the AIE is an ever present
voice at medical conferences wherever endometriosis
research is presented and discussed.
In February 2007 the 11th International Meeting of
Gynaecological Surgery took place in Italy in Avellino.
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AIE Sardinian Group with
AIE President, Jacqueline Veit
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This was a meeting to present the state of the art
in pelvic surgery for women. Again a whole day of
the 3 day event was dedicated to endometriosis –
yet another indication of the scale of this disease
among women of reproductive age – The AIE president,
Jacqueline Veit, was this time asked to present the
perspective of the women who have to undergo surgical
intervention.
Duing her aptly named presentation ‘The Other
Side of The Scalpel’, Jacqueline reminded
the seven hundred doctors and researchers present
of the importance to ask for and listen to their patient’s
account of their pain as this is the only method at
their disposal to really understand the disease the
woman lives with every day. Often in the rational
and professional pursuit of treatment of such a difficult
disease, the woman, at the centre of the
question, can be forgotten. Thus Jacqueline underlined
again the importance of the doctor-patient-relationship.
In her conclusion to this chiefly medical audience
she used the words of Italian Senator Bianconi: ‘When
we take care of women we take care of the future’.
Endometriosis is on its way to being classified as
a ‘Social Disease’ by the Italian Government
after an 8 month investigation by a Commission of
the Department of Health.
This is not the kind of ‘social disease’
suffered by the gang members of the musical ‘West
Side Story’! Instead this marks a move towards
concrete recognition by a European Member State of
the potential effects on a woman’s ability to
live her life fully if she has endometriosis.
The work towards the classification, which was encouraged
by the work of a government commission on 18th January
2006, led to the move by member of Italian National
Senate, the Honourable Laura Bianconi to call for
a change in the law to recognise endometriosis and
its various possible implications in the life of a
woman alongside other chronic diseases which qualify
for special assistance.
Naturally the AIE was there at every step on this
journey – first on the panel of consultants
during the commission’s investigation and then
in collecting signatures, in support of the change
in the law. The campaign to collect signatures was
launched in March 2007 and in less than two months,
more than 13,000 signatures were collected. (Editor’s
note: to date, December 2007, 31,000 signatures have
been collected).
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Jacqueline Veit meets
Italian Health Minister, Livia Turco |
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In
May 2007 Jacqueline Veit was invited to a press conference
by Laura Bianconi alongside the Italian Health Minister,
Livia Turco, the president of the commission, Senator
Ignazio Marino and Senator Bianconi. Jacqueline spoke
directly to the Minister for Health on behalf of all
of us, asking for the right to specialised, multi-disciplinary
treatment and to economic support for women with endometriosis
amongst other subjects which confronted Minister with
the full reality of life in Italy today for women with
the disease. The AIE has been embraced by decision-makers
and experts, not only by the medical research field,
but also by government as an expert, professional body
with a voice, the voice of the women with endometriosis
and their families, to be listened to on an equal level.
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On that day, Laura Bianconi spoke about making an investment
in women and children’s medical service “because”,
she said, “if we invest in women we take
a great preventive action and make in investment in
the health of the population.”
In the world of endometriosis support
and awareness, March is always a busy month, the month
of ‘Endometriosis Awareness Week’.
In Italy Awareness Week is now a national phenomenon,
as in 2007, the year in which the AIE celebrated its
eighth birthday, this was the third annual Awareness
Week celebrated in Italy.
All over the country, women took part
in events to raise awareness of this still underestimated
and little known disease. It was also an opportunity
to promote news of the support and friendship offered
to women in their local area thanks to the growing support
network here in Italy.
Among the events were an inaugural
meeting of a new support group as well as many special
support group meetings across the country, tables and
stands in town squares and hospitals, a regional conference
for Tuscany in collaboration with the specialist endometriosis
centre in Florence (this was attended by Jacqueline
Veit), members of the AIE gave talks and presentation
in their local hospital and handed out information.
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groups also worked locally to use this year’s
Awareness Week to introduce the issue of endometriosis
as a ‘social disease’. The press, both national
and regional captured the essence of the week and reported
widely on the activities of the AIE and its members.
Interviews with well known physicians were also published,
doing much to spread the word. There was even a TV programme
broadcast in Sicily and Calabria which broadcast a 2
hour show about endometriosis featuring both a women
with the disease and an expert physician. The AIE also
used the Awareness week to send out an email letter
to each member of the National Council for Health.
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AIE volunteers work
to raise awareness |
Clearly 2007 has been an important
year for an increased awareness of endometriosis in
Italy. Rightly so when our disease is spoken of in
parliament, is the focus of so much Italian medical
research, is even featured on television and our Italian
Endometriosis Association is at the centre of such
important national changes for the better.
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| SEE
ALSO: |
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Associazione
Italiana Endometriosi Onlus (AIE)
Fertility
and Sterility publishes paper which describes five-year
action plan in Italy
Associazione
Italiana Endometriosi (AIE) presents a proposal for
a new law to the Italian Senate
Seminar
in the European Parliament highlights Italian Senate's
five year plan for women with endometriosis
Conclusion
of investigation by the Italian Senate into endometriosis
as a social disease
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