AFTER eight years of having symptoms of endometriosis, a collapsed lung, misdiagnosis, and three surgeries, Shauna Fuller Clarke was finally diagnosed in 2010 with stage four endometriosis.

Endometriosis is the name given to the condition where cells lining the womb (uterus) are found elsewhere in the body.

“I researched the disease, was very active in online forums and I learned that an estimated 176 million women worldwide have this debilitating disease. But with little awareness in Jamaica, and a support network lacking, my story is not a unique one and this is what motivated me to start the Shauna Fuller Clarke BASE Foundation,” Fuller Clarke said.

She explained that her symptoms started with her gasping for air after short walks, and she initially thought her symptoms were from her cigarette smoking.

“When I went to the doctor he told me I had asthma and gave me an inhaler and some tablets. But how could I have developed asthma at 29 years old?”

After a few weeks she said her energy levels went even lower.

“I couldn’t walk more than 10 feet without stopping for a breath,” she said, explaining her situation in April and May of 2009. “I couldn’t ignore the feeling that I was choking every single time I lay down in bed. This could not be asthma. I needed to get a second opinion.”

She said she remembered feeling numb when her parents told her she had to check into the hospital immediately because something was wrong with the x-rays she had done.

“My only thought was that my smoking had finally caught up with me,” Fuller Clarke recalled.

She was told by her doctor that the right side of her chest cavity was completely blurred out. She had spontaneous pneumothorax, a collapsed lung. That side of her chest was completely filled with liquid which had to be drained.

“He injected me in my upper back and there it was — two litres of dark red liquid.”

She said she was assigned a pulmonologist and internist who drained another two litres from her chest.

“My family and I took the decision to get further treatment abroad (in Florida). I had lost a lot of weight, I was very weak, I could barely walk.”

Fast-forward to the Florida hospital’s emergency department. She was rushed in, strung up and had a whole new set of tests done.

“With the preliminary deductions, my lung had collapsed for over a year and I had to have surgery! I could not believe what I was hearing. Surgery? Whatever was happening inside my body started to frighten me.”

She said after the operation, doctors told her that her lung was the size of a tennis ball and was wrapped tightly with mucus. They didn’t know what caused it. She would live with a tube inserted in her chest for the next 10 days, when they would also do more tests.

“I really got first-class treatment at the hospital, but they released me in the end. They released me and were still not able to tell me what exactly caused all this drama in my life,” she said.

She said a few of her doctor friends suggested that she look into endometriosis. Back in Jamaica, her family and friends urged her to visit a gynaecologist to get an opinion on the endometriosis theory. After a couple of visits to the doctor, several questions, and an ultrasound, the doctor told her that it was very likely she had endometriosis.

“A couple months after, I had a laparoscopy done and when I woke up I was told I had stage four endometriosis,” she said.

Today Fuller Clarke is providing support and information to women who suffer from endometriosis and promoting research in the medical field through the BASE Foundation (Better Awareness and Support for Endometriosis) of which she is the co-founder and executive director.

“We also aim to create better awareness of this disease among the general public, women, and the medical profession. In order to fulfil the BASE mission, our objectives include providing moral and financial assistance to women who suffer from the disease, creating greater awareness by hosting events and distributing informative material, and also undertaking research on endometriosis in Jamaica,” she said.

The foundation was officially launched at King’s House, under the patronage of Lady Allen, on Wednesday. Endometriosis awareness takes place across the globe during the month of March.

Visit www.basejamaica.com or email hello@basejamaica.com for more information.