Recent achievements by Associazione Italiana Endometriosi (AIE)

December 2007

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.

Some AIE members at World Meeting Milano
Some AIE board members and volunteers at the World Meeting Milano, May 2006

At the forefront of this work is the Associazione Italiana Endometriosi (AIE), the Italian Endometriosis Association. There are also several centres of expertise 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 Milano 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.

The Cagliari meeting

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.

Promoting medical research

AIE Sardinian Group and Jacqueline Veit
AIE Sardinian Group with AIE President, Jacqueline Veit

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.

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.

AIE’s role in recognising endometriosis as a social disease

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 18t 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).

Jacqueline Veit and Livia Turco
Jacqueline Veit meets Italian Health Minister, Livia Turco

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.

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.

Awareness

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.

AIE volunteers
AIE volunteers work to raise awareness

The 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.

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.

See also

National support organisations around the world

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