LIVING WITH SCD
THOUGH diagnosed with sickle cell disease (SCD) at two years old, Jebby Campbell didn’t miss out on much while growing up with her siblings.
“My parents exposed all of us to the same things and opportunities. I will admit that there were some things I was unable to do, and there were limitations with others,” she said.
It was her cries about a pain in her leg as a toddler that raised an alarm for her parents.
“My mother recalled that she was confused as there were no bruises. I did not fall, yet I could not walk,” said Campbell, who added that her mum was familiar with the signs of SCD, as her brother is a sickle cell patient.
She said her mum, Janet Campbell, took her to the Sickle Cell Unit at The University of the West Indies, and, after a series of tests, her worst fear was confirmed.
SCD is a common genetic disorder in Jamaica. One in every 150 people has the condition and one in every 10 individuals has the trait— meaning one can have the trait and not have symptoms.
Individuals with SCD inherit the genes from both parents. The disease causes a mutation in haemoglobin, the oxygencarrying protein in red blood cells. The defective haemoglobin causes some red blood cells to shape-shift, transforming from healthy doughnut-shaped cells that move easily through the bloodstream into scrawny, sickle-shaped versions. These misshapen red blood cells are rigid and sticky, so they can’t move through the small blood vessels freely. Instead, they clump together, creating micro-clots that block or restrict blood and oxygen flow.
These blockages can occur just about anywhere in the body, from the limbs to the lungs, and can trigger a sickle cell crisis — an episode of severe pain that lasts for hours, days or a week, and often means a trip to the emergency room or a hospital stay.
Campbell’s mum knew she would need a strong support system.
“I spoke to her in an age-appropriate way,” her mum said. “I didn’t hide anything from her. I explained that she had sickle cell disease and involved her in the treatment as much as possible, to give her a sense of control and power.
Campbell said she understood her condition and was taught to be responsible from an early age.
“My mum was my rock. My mother is solid. She was my legs on the days when I could not walk, she was my voice when I was in too much pain to speak. She would nurse me to health without complaining. She ensured that I did not fall behind in school. My father was my mother’s tower; he was calm. He made sure that my needs were met and that I was never out of medication, sweaters, and leg warmers. He was very attentive to my needs,” Campbell said.
“I never felt marginalised. My parents socialised me to be resilient and I was never taught to let my illness be my handicap. Even when I was sick, my mother would put my books on my bed and encourage me to read. My three younger sisters would read to me as well,” she said. “My friends from school have become an extension of my immediate family.
“My school friends were aware of my condition and were very accepting of my limitations. I remember being ill and was hospitalised while I was in fourth form at Holy Childhood High School, and my form teacher took my classmates to visit me. They arrived in their numbers with my schoolwork and gifts.”
Her reality, though, is that she is nearly always in excruciating pain.
“I would say on the scale, my pain is at 10/10, as regular pain medications do not work. I currently take morphine,” she shared.
Her crisis generally last for seven days, on average. That is seven days of just laying in bed and not being able to use her hands or legs. During her crisis, she tries different techniques to alleviate the pain, such as warm baths, applying heating pads, and having family members gently massage the painful areas.
Now an attorney-at-law, she admits that getting to where she is today was not easy.
“I had to work hard and learn how to balance my life. I hold a Bachelors in English and International Relations, a Bachelors of Law, and a Masters in International Commercial Law. As someone who is living with the disease, I am easily tired as the lifespan of my red blood cells are shorter than that of the average person. During my years at university, many persons were surprised when I was ill and learned that it was due to having sickle cell disease,” she said.
But, what has accessing care been like for her?
“Thankfully, there is the Sickle Cell Unit at UWI, and so I have never had an issue accessing health care. My issue lies in the fact that I am often told that I do not look like someone who has the disease, and so my condition is never taken seriously. I sometimes find myself educating people about my condition. I believe that, at times, people do not take the time to learn about the disease and so we are judged by our appearance. As an SCD patient, our genetic make-up is very fragile, thereby prone to other health conditions and so we have to be examined thoroughly and treated with care,” Campbell said.
But, according to Campbell, life is beautiful.
“I consider each day to be a blessing. I have known quite a few young persons who have died from the illness. Am I scared? Yes. But I believe in living my life to the fullest, giving myself the best, taking care to reduce or diminish my stressors and control my inner space. I remain optimistic because of my faith.
“Also, self-care is very important. I try to practise acts of gratitude and to take each day as it comes, count my blessings, pursue my passions and celebrate my successes. And, most importantly, [I try to] eat healthy and rest adequately.”
To families dealing with SCD, especially those with young children, she said: “I encourage you to offer as much love and support as possible to your child. Your child needs to know that he or she is not different and that the world is there to conquer. The child must be taught about his or her limitations from early on, explain what the illness is, teach the children to be responsible, as you will not always be there with him or her.
“As far as I can recall, I had to walk with my sweater, leg warmers, and umbrella to school. The world can be cruel, and not many people will attend to the needs of your child but the greatest thing is for that child to understand his or her health condition and to be comfortable with it. Make sure to get a letter from your doctor and place it on your child’s file at school. If the child is travelling, take the letter with you. The support of family and friends is very vital. To this day, my family and friends are my support system,” Campbell said.