As a woman, I can tell you… Women do not want to be seen as victims. We face our difficulties. We also see the need to raise awareness among other women and men: for those who are confronting specific challenges, and those who are in a position to support and assist them.
In this light (and with a vision) Shauna Fuller Clarke established the B.A.S.E. Foundation (Better Awareness and Support for Endometriosis), a registered non-profit organization, in March of this year. She is the Executive Director; the co-founders are her very supportive husband Ricardo and her mother Sonia.
What is endometriosis? I had heard of it, but there was so much that I did not know. At a tea hosted by the Foundation’s patron, Her Excellency the Most Honorable Lady Allen at King’s House recently, I learnt much, much more. I came away saddened by the fact that the disease has such a serious social and psychological impact; disturbed by the lack of understanding in society; and in awe of the women who live with the disease and who are working to make their lives better (including Shauna herself).
At first glance, the tea event on a verandah – overlooking a sunken garden with a sundial, flowering shrubs and a glimpse of the mountains beyond – seemed more like a social event. I felt a little under-dressed (I don’t wear hats). But the group of women who attended were all immediately engaged by the importance of this issue. There was no time for idle chatter. In fact, many practical suggestions were made as each table discussed solutions. For example, Executive Director of the Bureau of Women’s Affairs Faith Webster outlined possible government actions, including the classification of the condition as a disability and its inclusion in National Health Fund benefits.
Here are the stark facts of endometriosis: It is a condition where cells similar to those in the lining of the womb (uterus) are found elsewhere in the body. Every month, when women have their period, these cells also bleed -internally. This causes great pain; the cells can adhere to other organs in the body, causing damage (including the skin, eyes, spine, lungs and brain); scar tissue forms; and the result can be bowel problems, painful sexual intercourse, infertility, miscarriages.
I was shocked to learn that this debilitating condition affects one in every ten women globally – yes, one-tenth of the world’s women! That is more than the combined numbers of people with breast and prostate cancer, diabetes and HIV/AIDS combined. 176 million women aged 15 to 49 are endometriosis sufferers. Then how come it is not better diagnosed, recognized and treated?
Shauna suffered from some of the most serious symptoms for an agonizing eight years before she was finally diagnosed with Stage IV Endemetriosis. She had a collapsed lung, and three surgeries. Her medical bills sky-rocketed. A key concern is the repeated misdiagnosis of the disease. Women generally see several health care providers before they are referred to a specialist. Lady Allen, herself a former nurse, corroborated Shauna’s concerns about a lack of awareness of the disease among the Jamaican medical profession, including nurses. As Patron of the B.A.S.E. Foundation, the Governor General’s wife has a clear understanding of all the issues.
Shauna dispelled misconceptions. One of the most important points to clarify that this is much more than a “bad period.” Employers think workers are using it as an excuse to get time off, once a month; some lose their jobs as a result of this lack of understanding and empathy. To some extent, a woman’s menstrual cycle is still a taboo subject in society; one certainly does not discuss it openly, except among close female friends. This sidelining of “women’s diseases” does not help the situation.
It’s not a sexually transmitted disease (STD) either; nor is it cancer; nor is it an infection. It is not contagious. It is a chronic illness, the cause of which is not really known. There is no cure; only treatment that can ease the symptoms. Women often make dietary changes (a gluten-free diet seems to help some), exercise and seek to reduce estrogen levels.
Women who suffer from the disease find it difficult to cope with social commitments – and with intimate relationships. A woman’s marriage or long-term relationship can be a casualty, especially if she becomes infertile. Depression often follows – especially when there is a lack of support among friends, family and society in general.
The B.A.S.E. Foundation plans to tackle these issues. Firstly, with doctors’ bills always a huge concern, it plans to provide assistance with the cost of medical treatments for women who cannot manage financially. It will host special events to promote awareness amongst women, the general public and the medical profession. It will promote and encourage research in Jamaica – much more needs to be done. Information is key, so it will distribute accurate and helpful information across the island by every means, electronic and otherwise. And it will set up networks and train volunteers who will provide support for women with endometriosis (or “endo-sisters”).
This mutual support is so important. The Foundation has started setting up support groups, which meet monthly. Kingston groups were set up in May, and I hope that this will be replicated across the island. The Foundation has been raising awareness through visits to schools and is preparing an educational campaign targeting student nurses. It is also seeking to integrate endometriosis awareness into workplace wellness programs and to ensure that general practitioners and gynecologists have information to distribute. It is planning to create a database of gynecologists in Jamaica – surprisingly, there isn’t one.
And now for action! The B.A.S.E. Foundation is planning Jamaica’s participation in a global Million Woman March for Endometriosis on Thursday, March 13, 2014. Shauna Fuller Clarke will be marshaling the troops (so to speak – this will be a peaceful march, of course!) The Jamaican flag has already been included in the official logo, which is pretty cool. Now Shauna needs everyone to sign up! Go to the B.A.S.E. Foundation’s website at basejamaica.com/march4endo/ or email: firstname.lastname@example.org. You can also find much more information on the Foundation’s Facebook page and contact them @basejamaica.
Get involved, and support Shauna and her “endo-sisters” in Jamaica, and around the world. And spread the word!
- Jodie Dunne: A Personal Battle With Endometriosis (woman.com.au)
- Endometriosis Is A Disease That Is Incurable But Treatable (wilfredojqet.wordpress.com)
- Progress made in understanding causes and treatment of endometriosis (healthresearchreport.me)