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Women with endometriosis said to be misunderstood

Support group trying to raise awareness of condition

Friday, December 20, 2013    

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THE Better Awareness and Support for Endometriosis Foundation (BASE) is expected to participate in a worldwide million-woman march next year in a bid to raise awareness about the life-threatening medical condition.

Endometriosis is a condition in which cells from the lining of the womb grow in other areas of the body leading to pain, irregular bleeding and infertility.

Head of BASE Shauna Fuller Clarke said Jamaica was one of the first countries to support the event which will take place simultaneously in over 40 country capitals on March 13, 2013.

She explained that local participants and BASE members will walk from Devon House to Emancipation Park in St Andrew, clad in yellow, in an effort to bring awareness to endometriosis and effect change in how persons affected by the condition are treated.

"We were one of the first countries to volunteer and our flag is even in the logo being used for the march. If we educate persons on the implications of endometriosis and stand together we can effect change and we wouldn't be called mules. We need to make persons aware that if it is picked up (diagnosed) at a younger age, it will lead to a better quality of life," she said.

Fuller Clarke, who is on a quest to further educate the Jamaican society about endometriosis, said in a recent forum over tea at King's House, under the patronage of Lady Allen, because of ignorance of the issue, women who suffer from the condition are often misunderstood.

"One in 10 women have endometriosis and it leads to loss of productivity up to seven and a half hours per week. A lot of times employers think women are just using the pain they experience as an excuse to not work," she said.

Managing Director for MaxBrown Limited and Satori Resort and Spa Sophia Max Brown endorsed Fuller Clarke's call for further education on the issue.

"We need to make employers aware of the effects of endometriosis and how persons who have it deal with it. If we educate employers about the disease we will get them to be more compassionate," Max Brown said.

Chief Executive Officer of Manpower and Maintenance Services Audrey Hinchcliffe who also endorsed Fuller Clarke's education drive, further called for the education of young girls and their parents about endometriosis.

"The guidance counsellors and nurses in schools need to speak to young girls about the issue so as soon as they start complaining in schools they can think about it. Parents need to be educated as well, whether it be some pamphlets or book to take home so that when they go to their doctors about menstrual pain they [parents] can say, 'Would you like to take a look at this?'" Hinchcliffe said.

Executive Director of the Bureau of Women's Affairs Faith Webster said the issue was once classified as a disability and called for a public debate to get society to speak about the issue which she describes as being taboo.

" If we get society to speak about the issue, have campaigns and target health-care practitioners and physicians we would see a turnaround," Webster said.

Fuller Clarke further explained that endometriosis caused her lungs to collapse but she was not aware of it and thought she was

just unfit.

She said it was not until she received a second opinion that she realised the seriousness of her condition.

"My lungs had collapsed for a year and I believed I was unfit as I became tired easily. In 2009 I got a second opinion and realised my dilemma. In the end five litres of liquid had to be extracted from my chest," Fuller Clarke said.

Fuller Clarke said other cases of endometriosis exist where the condition affects the brain, lung, nose and bones which later leads

to osteoporosis.

While there is no cure for endometriosis, the condition can be controlled by maintaining a gluten free diet, regular exercise and oriental medicine therapy.

Fuller Clarke further urged women to report abnormalities in their menstrual cycles and bodies to their doctor in order to reduce the number of extreme complications that stem from endometriosis.

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