It is sad to me that some women’s ailments seem to have a shroud of mystery around them. People cannot, or will not talk about these diseases, especially if they involve the reproductive system. There is, at the very least, a kind of squeamishness – or at worst, a complete taboo, and silence.
I spoke recently to Shauna Fuller Clarke, Executive Director of the non-profit B.A.S.E. Foundation, which she co-founded with husband Ricardo Clarke and mother Sonia Fuller just two years ago. B.A.S.E. stands for Better Awareness and Support for Endometriosis. I confess that up to two years ago, I had not heard of the disease. My bad. But that rather reflects the “hush hush” nature of attitudes towards diseases like these – it simply hasn’t been talked about, much.
And Fuller Clarke tells me that, since endometriosis affects one in eight women globally, approximately 100,000 girls and women would be suffering from Endometriosis in Jamaica. No small number, but some doctors believe that is a conservative figure. So Jamaicans should pay attention and understand it and its complications and significance for our women. It’s another of those non-communicable diseases that our Minister of Health spoke about recently.
A sea of yellow: Jamaican women participate in the global Endo March, which includes some 60 countries. (Photo: Facebook)
Fuller Clarke spoke to me about her personal experience. It was “quite traumatic.” After almost ten years of severe chronic pain and a collapsed lung, she was eventually “properly diagnosed” with Stage 4 endometriosis. Once she knew, she went online and researched the disease, connecting with several women who shared similar experiences. “I learnt a lot and received support from these ‘endo-sisters’,” Fuller Clarke notes. Realizing that this mutual support system was important – and that there was no entity offering support and information on the disease in Jamaica – she decided to start the B.A.S.E. Foundation.
Shauna Fuller Clarke with the supportive Dr. Michael Abrahams at the Endo March. (Photo: courtesy of Shauna Fuller Clarke)
Why should we take endometriosis seriously, I asked? Fuller Clarke pointed out that it is one of the “top ten” most painful diseases worldwide and one of the top three causes of infertility.The total number of endometriosis sufferers worldwide (around 200 million) is greater then the combined number of people with breast cancer, prostate cancer, diabetes I and II and AIDS. Astonishing!
“Society has taught us as women that ‘painful cramps’ [during menstruation] are normal,” she added. “We don’t speak about women’s organs and we most certainly do not speak about infertility issues.” The symptoms include debilitating pain before, during or after the period, pain in the lower back, pain during sexual intercourse, gastro-intestinal stress and fatigue.
Those are some of the physical impacts. But what is so insidious about the disease is that it has all kinds of social and psychological effects. Fuller Clarke gives me some real life stories of women she has met… A teenage girl cannot sit a final exam because she’s in pain; she is told she has to re-sit the entire year. A woman cannot perform at her desk at work and is often absent on sick leave; she is fired from her job. A woman has pain during intercourse and cannot conceive a child; her relationship with her partner suffers.
So mental health is a major factor. Chronic pain, the inability to participate fully in social activities like a “normal” person and the inability to conceive – all fuel depression. “There are real cases of women who have taken their lives and there are those who have expressed suicidal thoughts as a result,” Fuller Clarke notes, sadly. The woman’s family life, her school, college or work life, her mental well-being in general – all are affected.
So once a woman or girl has identified her disease, what does she need to do? “Arm yourself with information!” says Fuller Clarke. “Pay attention to your body, read up on how the disease presents itself, read up on treatment options and their effects to determine if those treatments can work for you.” A strong support system (partner, family, friends) will help you to deal with the disease. And make sure you find a doctor with experience in treating endometriosis. “Have an open discussion with a doctor who will listen to you and discuss the goals of your treatment. For example, do you want to manage the pain better, or do you want to discuss pregnancy? It may take one or two tries to get the right combination of treatment options.” she adds.
What is the most important advice you can give to someone who suffers from endometriosis? I ask Fuller Clarke. “Remember…You are not alone,” she affirms. There is no cure for endometriosis; but it can be managed effectively. If you are not satisfied with your doctor’s assessment or if the treatment isn’t working, don’t be afraid to get a second (or even third) opinion, she recommends. She also advises sufferers to join the Foundation’s support group meetings. It helps to share and learn from others.
I ask Shauna Fuller Clarke how the work of her Foundation have been going. Does she see progress? March was Endometriosis Month and the Foundation engaged the Jamaican public in a series of informational (and fun) activities – more than in 2014. “I think we did very well this year,” says Fuller Clarke. After a Thanksgiving Service to celebrate its second anniversary on March 1 and a well-supported fundraiser in Kingston, the Foundation hosted its second public forum, “Endo Talk” in partnership with the Hugh Wynter Fertility Management Unit at the University of the West Indies. “In addition to gynecologists, our panel included an acupuncturist for those wanting to try out alternative therapy and we had a video presentation by a psychologist,” says Fuller Clarke. “We partnered with We Got The Runs fitness club to put on our very first M-Power Boot Camp Challenge.”
Shauna Fuller with a participant at this year’s Endo March. (Photo: courtesy of Shauna Fuller)
To round off the month’s activities: “We had hundreds walk with us in the streets of Kingston for the global campaign Endo March,” Fuller Clarke tells me. Fortunately the weather was good and the enthusiasm was high. Jamaica joined the global movement for the second year.
This year the Foundation has seen a significant increase in enquiries. Awareness is growing and women are seeking answers. As the Kingston-based Foundation continues its work, Fuller Clarke hopes to widen its impact across Jamaica. “We will start hosting forums in other parts of the island. We will set up satellite support group networks in Mandeville and Montego Bay. We anticipate participating in Endo March again next year and we will come up with a specific campaign for the schoolers. Other exciting activities are in the works,” she notes, “but closer to the time we’ll be able to speak about it.”
With these plans in the works, the B.A.S.E. Foundation’s major concern is – yes, you’ve guessed it – funding. “It has been a challenge to do what we do with such limited resources available,” Fuller Clarke admits. She is hoping key stakeholders will buy into the campaign, and asks corporate Jamaica to lend support for the Foundation’s island-wide awareness campaigns. She would like more funds to hire support staff (“Because it’s still only three of us”). She adds, “We believe this issue with its profound impact is bigger than ‘us.'” So funders, large and small, step on board!
There is still much to be done, Fuller Clarke reflects; she is just getting started. “Many of these women started having symptoms from the teenage years, so if we can intervene so treatment begins at a much earlier age, then these girls will never have to go through what I went through and what so many of us are going through today.” This is why she plans to extend the public information program to schools and to the workplace in the coming year.
Still, many women and girls have never heard of endometriosis. “That has to change,” says Shauna Fuller Clarke. “We need to start talking about it.”
And, with increased support, the B.A.S.E. Foundation will take it from there. More power to the Fullers!
A young participant at last weekend’s Endo March. (Photo courtesy of Shauna Fuller)
Need further information? Want to support, volunteer or donate to the B.A.S.E. Foundation? You can contact them here:
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