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Monday, March 06, 2006

Time for More Health Awareness.

This week is Endometriosis Awareness Week. A group of women have held a communal screaming event (oh yes!) outside Parliament, to give people an idea of the pain caused to so many women by endometriosis.
WOMEN SCREAM FOR HELP IN DISEASE FIGHT
By Ben Pindar, Community Newswire
HEALTH Scream London, 06 Mar 2006 - 08:39

A group of women were today gathering outside Parliament to scream for better funding and increased awareness about an incurable crippling disease affecting two million women across the UK.

The communal scream has been organised by the National Endometriosis Society and following the event the women will march on Downing Street to hand over a 12,000-signature petition to Tony Blair.

Organisers are staging the event to mark the launch of Endometriosis Awareness Week and the publication of a major new study which shows women with the condition face misdiagnosis, ignorance and misunderstanding.

Endometriosis is a condition where cells like the ones in the lining of the womb are found outside it which can create painful inflammation, adhesions and cysts.

A total of 89% of British sufferers experience pain throughout their monthly cycle with the average pain lasting 14 days a month. Of those in employment with the condition, 80% lose an average 5.7 days a month.

The new poll being published today reveals women have to wait an average of 11 years to get a correct diagnosis after the initial onset of pain.

Leading artist Adelaide Damoah was leading the demonstration outside the Houses of Commons today and everybody was screaming in unison to represent the almost continual pain some women endure as part of their daily lives.

The National Endometriosis Society wants increased funding for research into the disease and also wants the Government to help raise awareness about the suffering the condition can cause.

Robert Music, chief executive of the National Endometriosis Society, said: "The communal scream event is indicative of the pain each of these women has to endure but also demonstrates their frustration at a lack of funding and action from the Government.

"Their needs to be a lot more research into this condition and the impact it has peoples lives but this can only be achieved if the Government increases current funding levels.

"The funding received by researchers investigating this disease is very small but it is obviously incredibly important that more is done.

"Awareness of the condition also needs to be dramatically increased as a lot of symptoms go unnoticed.

"We need a three year awareness campaign at the very least so we can reach all women and ensure everything is being done to beat this condition."

At present there is no cure for endometriosis, with most patients treated through medication. For many, a range of alternative and complementary therapies have also delivered some degree of success in alleviating symptoms and pain.

Women with endometriosis or those wanting more information about the disease can contact the National Endometriosis Society via the helpline on 0808 808 2227 or through the website at endo.org.uk


Two years ago, for National Endometriosis Awareness Day, I wrote the following.
National Endometriosis Awareness Day
The National Endometriosis Society tell me that today is National Endometriosis Awareness Day which I had not known. Unfortunately I have been super-aware of this disease the last few days because of the agony and misery it has been bringing me.

Every Part of My Body Hurt is not only a very apt description of the disease, but also a challenging article about one woman's experiences of endometriosis, diagnosis, treatment, and not recovering, but taking control of her treatment options.
(Read more...)



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2 comments:

TP said...

Screaming in protest - I bet that was amazing to behold. Go girls!

Also, it's good to see a man heading up a charity set up specifically to help women. Reminds us that there a a few good men out there!

The Patient Connection said...

Endometriosis – Its Diagnosis and Treatment – Tell us your story in a New Research Blog


We would like to take this opportunity to invite you a research blog on Endometriosis. We are particularly interested in the story of your diagnosis, treatment and support provided for the condition.

To take part please click this link

http://www.thepatientconnections.co.uk/blog.asp?bid=&uid=47

Please feel free to post any links to useful resources for other Endo sufferers.

The blog is anonymous and easy to use. Instructions are given on the blog so thanks in advance for your help it is much appreciated.


Best wishes

Belinda
The Patient Connection
Belinda.shale@thepatientconnections.com

PS Please email me if you have any queries about the blog or any of our projects.