Living with Sickle-cell disease

Peter-John McGill recounts being depressed and hospitalised

Sunday, July 02, 2017

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IMAGINE being born with a condition that could shorten your normal life expectancy. Or being hospitalised on numerous occasions — lying helplessly, weak, barely able to talk and strung up on multiple IV lines for blood, fluids and medication.

This has been the reality 24-year-old Peter-John McGill has had to live, not just imagine.

Sickle-cell is a chronic disease affecting one in every 150 babies born in Jamaica. It is an inherited genetic condition where the red blood cells form a crescent shape due to the stress they undergo. The red blood cells can no longer manoeuvre through the tiny blood vessels, resulting in them getting stuck.

As the red blood cells are like oxygen delivery trucks, the body's tissue suffer from a lack of oxygen, resulting in severe pain.

McGill was diagnosed with the condition at age five and faced with a disease that was almost inevitable, as both his parents have the sickle-cell trait — which is an asymptomatic version of the disease.

He recalled how growing up with the condition made life challenging, at times.

“Sickle-cell puts a limit on how much physical activity I could partake in. It also brought with it absences from school and waves of depression, being confined to hospital beds so frequently,” McGill said.

His mother was very cautious about him being outside without her supervision. His teachers at school were also briefed and guarded against anything happening to him while under their care.

“I would always be accompanied by numerous bottles of water to keep me hydrated wherever I went, whether at school or any extraordinary outing,” he said.

People with sickle-cell anaemia have various problems. They get painful crises where they get severe pain in the joints, abdomen, and chest. McGill was no exception. He was frequently hospitalised when he was much younger.

In 2002 his condition worsened and he was admitted to hospital for little over a month. He had an aplastic crisis, which is a temporary stoppage of red blood cell production. Because of his low blood count, the young McGill had to undergo several blood transfusions.

He said he was continuously being medicated for pain and was transferred from one hospital to the next.

“It was really overwhelming laying helplessly, weak, barely able to talk or move around, strung up on multiple IV lines for blood, fluids and medication. Being away from the life you are used to for so long really felt like there was no getting better and that I had fulfilled my time on earth,” McGill recounted.

Eventually his condition improved and he was “back to normal”. But that experience in 2002 would be one of many visits McGill would have to make to the hospital.

In August 2011, McGill matriculated to the University of the West Indies (UWI), Mona, leaving his hometown of Ocho Rios and the care of his family to settle in student housing on campus. One thing remained constant, however, which was his sickle-cell anaemia.

In fact, throughout his four years at UWI, he was hospitalised approximately eight times. This number does not include incidents where he was ill and had to self-medicate or visit the Sickle Cell clinic on the university campus.

“Experiences of hospitalisation were often frustrating and, as expected, very painful physically and emotionally. I've faced numerous instances where I was unable to walk and I'd have to sit up in a chair in the waiting area at the emergency room (ER) for hours waiting to be attended to. Other times, waiting for a bed to become available... for me to be treated,” he said.

He also recalled instances where he was allegedly deprived of sufficient medication because the doctors and nurses claimed he was addicted to the pain medication they were administering.

Over time that changed and, due to his frequent visits to the ER, he said he developed a relationship with some of the staff and sometimes got expedited treatment based on the level of pain and disability he was experiencing.

“Some days are better than others, but overall, a very depressing feeling being in hospital,” he noted.

McGill also mentioned that he was absent from school for half of his first year at UWI because of his illness and had to change his initial academic path.

However, that setback didn't deter him.

“I would say the disease acted as a motivation for me to excel in both my academic and non-academic university life as I was very involved in student leadership and other extra-curricular activities. Surprisingly, I managed to balance all of that while living with sickle- cell which, in my opinion, is no easy feat,” he said.

McGill is now a graduate of the UWI with a Bachelor of Basic Medical Science in pharmacology, During his tenure at UWI he served as deputy cultural and entertainment affairs chairperson and cultural and entertainment affairs chairperson for the Aston Preston Hall and was elected Guild cultural and entertainment affairs chairperson in 2015. All this he did while being the talent manager for Head Concussion Records and Illusion Sound and event manager for Illusion Entertainment.

Fast-forward to 2017, McGill says that his condition is “pretty mild” as he is more knowledgeable on matters of self-care and pain management. He said this has helped him manage the disease much better resulting in a better quality of life.

He also noted that when compared to many other third world countries, Jamaica has a good support system for people living with the disease, such as the Sickle Cell clinic at the UWI, Mona, and the Sickle Cell Support Foundation. The foundation is a non-profit organisation dedicated to assisting Jamaicans living with the disease through information sharing and providing moral and financial support.

However, though he lauded their efforts, he said there needs to be increased public awareness about the disease and how people can contribute to reducing the spread to future generations.

June 19 is celebrated as World Sickle Cell Day. Statistics from the World Health Organization indicate that approximately five per cent of the world's population carries the trait genes for sickle-cell disease. It is estimated that 1.8 in every 1,000 people in the Jamaican population has sickle cell disease.




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