Teach young people about sickle cell disease, says St Elizabeth mom

Determined to share her testimony in the hope that it will empower others, mother of two Sedonia Masters is raising her voice in a call for greater health education in Jamaica.

Masters’ nine-year old son Azarie, her second child, suffers from sickle cell disease, a debilitating disorder of the red blood cells which he got because of genes he inherited from each of his parents. Masters and Azarie’s father, Patrick Wright, both have what is known as the sickle cell trait, which means that there’s a 25 per cent chance that a child they have together will be born with the disease.

According to Masters, neither of them knew they were carriers of the trait, and neither of them had ever heard of the risk.

“I had my daughter Kazariah in 2012 and she was fine. I did all of the usual tests and prenatal care, and nobody said anything to me about sickle cell, even when I was pregnant with Azarie two years later. So, you can imagine my shock after Azarie was born and they told us at six weeks old that he had the disease,” shared Masters, still mystified as to how she was kept in the dark.

Consultant obstetrician and gynaecologist Dr Michelle Campbell-Mitchell says while every pregnant woman is supposed to be screened for sickle cell, there is often a gap in communication.

“One in 10 Jamaicans has the sickle cell trait and so it’s a fairly common phenomenon in this country. Across the public health sector testing is done, but unfortunately you find that not every pregnant mother knows her status. So there definitely needs to be greater education and advocacy,” Campbell-Mitchell explained.

For Masters, that unfortunate ‘gap in communication’ has meant a lifetime of pain for her only son. The haemoglobin in Azarie’s red blood cells is abnormal, causing the cells to become hard and sticky. The cells change from a healthy round shape to the shape of the letter ‘C’ like the farm tool called a sickle. When sickle cells travel through small blood vessels, they get stuck and cause severe pain and other complications.

“It’s tough watching your baby suffer. Sometimes the joint pain is so bad he can hardly walk. The pain meds are super strong, so you have to be concerned about that as well. He has been in and out of hospital, which affects school attendance. We have sleepless nights, not to mention the financial strain. Teachers in the school system also need to be more sensitised,” she asserted.

Azarie’s condition has also impacted his mom’s work-life balance. However, Masters says her work family at Access Financial Services has been a tower of strength.

“Not gonna lie, I have to say a big thank you to my manager, Nordia Dennie, who is very supportive, always encouraging me and being there for me. She really motivates me to keep going,” explained Masters, adding that it was Dennie who encouraged her to go back to school. “I had interviewed for a post here at Access, but I didn’t get the job at the time because I didn’t have the qualifications. She helped me to see that it was possible to go for the degree so that I could be ready for other opportunities.”

With just a few semesters left to complete her first degree at the University College of the Caribbean, the 36-year-old remains resolute in her plans for the future, despite the fact that she has had to take time off from her studies.

“I’m juggling a lot. But I’m grateful that Azarie has been doing well in the last couple months. He’s playing football now. He’s putting on weight and I’m so happy for that. I’m also grateful for my job. I’m grateful that I have a job where my colleagues understand what I’m going through,” Masters shared.

Now in her eighth year as a team member at the microfinance company, the Junction resident has been making strides as a business loans officer, using her knowledge of agriculture to great effect.

“I studied at Ebony Park HEART Academy when I left Holmwood Technical, specialising in livestock rearing and agriculture. I love nature and growing things. The knowledge comes in handy when I deal with my customers. Eighty per cent of them are farmers. I understand their needs and I’m able to guide them,” she noted.

While she strives for balance between work, motherhood and life’s challenges, Masters is stressing the need for a bigger push to educate Jamaicans around sickle cell disease. “Know your status before you get involved, even before you start a relationship. It’s not easy to see your child in pain and not be able to do anything much about it. It’s not easy to hear him ask you, ‘Why me, mommy?’ People need to have the information so they can make decisions, fully aware of the situation.”