Beyond the pain: Sickle cell patients tell stories of strength and survival

The fear and anxiety that can consume one’s mind after being told that you’ll only live to a certain age, is just one of the harsh realities in the life of a sickle cell patient. And this is one of the stigmas that Noel Bell wants to remove about sickle cell with his documentary, Beyond the Pain: Stories of Strength, Survival and Spirit.

Bell, who also has the disease, told THE STAR that he wants to change the conversation about sickle cell. His one-hour and 30-minute documentary features seven sickle patients who, he said, shares their stories about the source of their strength, how they survive, and how they remain optimistic.

Twenty-nine-year-old Daniella White is one of the patients featured, and she told THE STAR that being a part of it was her contribution to the conversation.

“I’ve been told by doctors who couldn’t figure it, to don’t try to do anything major, keep your dreams in a box, basically. You don’t know if tomorrow you’re going to alive. I was told I wouldn’t live pass age 20,” she said.

Today is being observed as World Sickle Cell Day. The Sickle Cell Foundation of Jamaica describes the disease as a hereditary blood disorder which affects red blood cells. People who suffer from the disease often experience severe bone pain, bone damage, painful leg ulcers, infections, loss of vision and strokes. In Jamaica, approximately 270,000 persons carry the sickle cell trait and are at risk of having a child with the disease. It said that every year, approximately 300 babies are born with the disease.

Well-known entertainer Beenie Man, as well as his son, Moses Jr, suffers from the effects of the sickle-cell trait.

“It is a dangerous ting that can kill, and that’s why me aim to raise awareness about it through the foundation. It is a disease that should not be taken lightly. If rain all fall, di whole a yuh body swell up. The pain that it give anno pain whey yuh can go get Cataflam fi it. More time yuh have to go hospital to get an injection fi it,” the entertainer told The STAR last year.

“Nuff time, Moses just freeze up ina him bed when the pain reach him. Him a 19 now, so me just a hope him grow it out and get stronger,” he added

Bell believes that making people more aware of the disease can help to lower its prevalence.

“We have to get people aware of this thing. I’m not taking anything from cancer, but I would like the conversation surrounding sickle cell to be as active as cancer, if we don’t cut this down, soon or later Jamaica is going to be a place where we only have sickle cell babies,“ he said

“I want people to know their status. Because I would never want to see a next person suffer with sickle cell. The pain is bone-crushing, and sometimes you say this to people and they think that you’re exaggerating. But there’s no easy way to explain pain that is all over your body. Everywhere that the blood passes through, there’s pain,” he added.

Bell said the documentary will be showed free of cost at the Law Faculty at the University of the West Indies this evening at 6 pm.

“This is something that you need to see. you might say, I don’t know someone with sickle cell; but if you trace your lineage, there’s someone with sickle cell or traces of the disease,” he said