Endometriosis Awareness Week 2006 creates noise, light and hope

19 March 2006

The annual Endometriosis Awareness Week (6-12 March) was kicked off ouside the UK Parliament at noon on Monday 6 March with a communal SCREAM!

: Adelaide Damoah in Parliament Square 6 March 2006

The SCREAM, arranged by artist Adelaide Damoah, was symbolic of he pain each woman with endometriosis has to endure, but also demonstrated their frustration at a lack of funding and action from the government.

A recent survey shows that endometriosis takes an average 8 years to diagnose, with 65% of women originally being misdiagnosed with another disease, and with almost 50% of women having to see five or more practitioners before they are diagnosed.

Earlier in the day Lone Hummelshoj, adressed these concerns on the BBC’s Woman’s Hour, along with Caroline Flint, UK Parliamentary Under Secretary of state for Public Health, and Dr Graham Archard, Vice-Chairman of the UK Royal College of GPs.

The picture of Diane Carlton, Robert Music, and Adelaide Damoah

Diane Carlton, Robert Music, and Adelaide Damoah delivering a box with 13,000 signatures to Downing Street

Later that morning, the National Endometriosis Society, represented by chief executive Robert Music, and the Endometriosis SHE Trust UK, represented by chair Diane Carlton, walked to number 10 Downing Street, to hand over a 13,000-signature petition to Tony Blair.

The petition calls for increased research into endometriosis, and funding to help raise awareness about the suffering the condition can cause.

On Tuesday 7 March, the Endometriosis All Party Parliamentary Group officially presented the data from their Pain and Quality of Life Survey to Caroline Flint, MP, in the House of Parliament.

CANDLES for hope

Meanwhile, in Portugal, a large 40kg cake was being baked and was served up by women with endometriosis and eaten by by-passers on the streets of Lisboa’s financial district.

This fabulous initiative by The Portuguese Endometriosis Society’s creative management was the celebration of the first anniversary of ASPOENDO, and they also succeded in creating lots of awareness for, and questions about, endometriosis!

The motto was:

“For each candle blown out – a woman must get the correct diagnosis, and treatment to reduce her pain”.

European Parliament is reminded again

Diana Wallis MEP

Diana Wallis MEP, took the opportunity for a one minute intervention on 13 March to state to the European Parliament:

Mr President, this afternoon you mentioned International Women’s Day. Last week was also Endometriosis Awareness Week. Figures for this female disease are much the same as when I raised this matter in the House last year: up to 14 million women in Europe affected, up to EUR 30 billion in costs to the EU economy for lost days at work.

Endometriosis is a condition that is stagnating in misdiagnosis, ignorance and misunderstanding; it takes up to 11 years from onset to diagnosis.

I can promise you, and it gives me no pleasure, that I will speak in this House on every appropriate occasion until every woman and every health professional in Europe is aware of this disease, its symptoms, its effects and the treatment options.

March recognised as Endometriosis Awareness Month in the USA

The Endometriosis Research Center is pleased to once again add New York, California and now Wyoming to states supporting their legislative awareness efforts.

Representatives from each legislature have again passed formal resolutions honoring March as Endometriosis Awareness Month and supporting the ERC’s efforts at raising awareness, providing education and support, and calling for increased research funding. For complete details and more information about all the ERC’s Awareness Month efforts, please see www.endocenter.org/awarenessmonth2006.htm.

Austria counts 350 members in less than 3 years

The second national “Österreichischer Endometrisetag” (Austrian Day of Endometriosis) on 11 March 2006 attracted more than 100 delegates. They listened to interesting lectures from doctors, questioned enthusiastically, and held a panel discussision on “Leading a well life despite endometriosis”.