March is being celebrated as Women’s History Month in several countries around the world, including the United States, the United Kingdom, Australia and Jamaica, to correspond with International Women’s Day. It is also Endometriosis Awareness Month in several countries around the world. Endometriosis is a serious condition that affects approximately 176 million women worldwide. It occurs when the uterine tissue, called the endometrium, grows outside of the womb on other organs or structures in the body.
Shauna Fuller Clarke suffered with this condition for a number of years and endured a lot of pain before being correctly diagnosed. Following her ordeal, she established the B.A.S.E. Foundation to help ‘endosisters’ like herself and other women and girls learn more about endometriosis. She shares her story below.
When did you first become aware of what endometriosis is?
I first heard of the word ‘endometriosis’ when I was overseas receiving medical treatment for a collapsed lung. That was in 2009 and I was not even able to pronounce the word correctly! My friends in Jamaica, who are doctors, were concerned about my “sudden” illness (the collapsed lung) and were emailing all sorts of possible diagnoses, given that no-one knew what had caused my lung to collapse.
I really found out what it was when I was diagnosed in 2010, right here in Jamaica, after undergoing an operative laparoscopy. Much of what I know now about the disease was learned through Google and online communities.
In your bio on the B.A.S.E. Foundation website, you share that you suffered for eight years before being correctly diagnosed. What was that time like for you?
It was a very painful time for me. Every month I experienced severe pelvic pain around the time of my menses. I also suffered from really bad bloating. To give an example, I was a size 8 and when I was bloated, I could only fit in a size 12. The bloating was so bad and painful that I was even mistaken for being pregnant! Around 2008, I started having shortness of breath, where I was misdiagnosed as having asthma. Based on my symptoms worsening, where I could not walk more than five steps without gasping for air, I decided to get a second opinion in 2009 – and this was when I found out about the collapsed lung that doctors suspect had collapsed for over a year. Of course, this time was more than a little scary for me and the family.
When did you first get the vision to start the B.A.S.E. Foundation?
After learning about the disease and really understanding its impact, I was really disheartened that there was no organisation that provided information and support to women who live with endometriosis. It is such a difficult condition to live with and affects us ‘endosisters’ far beyond the physical pain we feel. So my husband and I one day in 2012 discussed the idea, we shared it with my mom, and then decided to establish a foundation to help our Jamaican girls and women so they would not have to go through what we went through.
What were some of the issues you faced getting the foundation off the ground?
One of our first challenges was getting up the foundation registered, and then the process of getting charitable status. It really was a task, and there is no way we could have done it without a lawyer. Having lived abroad for many years, I couldn’t understand why the process was so long and almost cumbersome in this the 21st century.
Funding has also been an issue. With a general lack of awareness in Jamaica, organisations have not ‘jumped’ at sponsoring our initiatives, so we have put heavy focus on being social entrepreneurs to be able to continue our awareness campaigns and other projects irrespective of funding. Of course, with funding, our reach will be wider and be accomplished in a much shorter period.
As a non-medical professional, speaking about a medical condition has had its challenges. It takes on average of six to 10 years from a woman experiences symptoms of endometriosis to her being diagnosed. By any standard, this is much too long. So I challenge our doctors, not just gynaecologists, to be aware of the symptoms so they can detect it sooner. And I also encourage women to seek second, third, and fourth opinions if necessary if treatment options are not working. So this stance of mine has rubbed some the wrong way, but it is important to speak about so diagnosis times can improve.
How would you measure the foundation’s impact since its inception?
- Since we launched, we have provided specific information on the disease to over 100 women – with at least 10 now getting treatment (including surgery) as a result;
- We have established support group meetings in Kingston;
- The BASE @ School initiative was launched recently and we have already helped students get the care they need;
- The Ministry of Health has endorsed the work we are doing;
- We successfully lobbied and are so delighted to share that the Governor General of Jamaica proclaimed the month of March Endometriosis Awareness Month to join the ranks of large countries that already recognise it. I was told Jamaica is the first in the Caribbean to do so.
Why is it important for Jamaican women to get involved in this initiative?
It is important for not only women to get involved, but also men, children from all sectors of society, to show support for the thousands of young girls and women in Jamaica. For too long, women have believed (and have been taught) that painful cramps are normal. For too long, our society has taught us to not speak about women’s organs and fertility issues. We all need to be ‘endomarching’ to break down the walls of shame and silence so all are aware of this disease, so that we can now begin to support those who are affected and so that our medical researchers really try and come up with better treatment options and the cure that we deserve.
How can we women get involved with the foundation’s work? What kinds of roles would they play?
Anyone can get involved with the foundation’s work, women and men. One can easily sign up on our website to be a volunteer in the following areas – public awareness, article writing, counseling and support, fundraising and in social media.
What do you envision for the foundation in the next two to five years?
We envision having an effective network across the island covering the schools, corporate Jamaica and other organisations so that there is an awareness of this disease and that support is available for women and loved ones who are affected. We hope to be in a place where we can provide financial assistance to a determined number of women each year who have a serious challenge in paying for the treatment necessary for them to have a better quality of life. We envision being the ‘go-to’ organisation on endometriosis or being the catalyst for other similar organisations being established in the region. And we will be diverse in the way we raise money to pay for our programmes – this is actively being worked on.