Imagine a knife cutting deep into your flesh. Imagine it reaching even deeper and stabbing the bone repeatedly; such is the pain that those with Sickle Cell disease experience as described by Ms. Sabrina Kazim. She has been living with the debilitating disease for over thirty years.
Sickle cell disease occurs when a group of red blood cell disorders is inherited. Hemoglobin is a protein in red blood cells that transports oxygen throughout the body. Normal cells are shaped like discs, but people with Sickle Cell Disease have cells that are often shaped like crescents, which can stick to the walls of the blood vessels and cause blockages. When there is lack of tissue oxygen, Sicklers, as persons with the disease are known, often experience sudden and severe pain attacks, known as crises. These painful attacks can occur at any time and often require going to the hospital for treatment.
Sometime last year, I featured the organisation FACES (Fight Against siCkle cEll Stigma), which was founded by Ms. Sabrina Kazim. The organisation exists not only to spread awareness about the disease, but to also provide a place where Sicklers can meet and share their struggles and lean on each other for comfort and encouragement. Unified in their struggles, Sicklers are some of the strongest and most courageous members of our society.
But as soldiers fall during war, Sicklers also often lose their battle. Death occurs and reminds us that there is still no cure for the disease and the Sickler’s life can be spent dreading not only death, but living also because of the excruciating experiences in battling the disease. It is the young who often die from the community.
In Memory of…
Candace Ifill died on October 20th at the age of twenty-four. She was a registered nurse, who worked at the Georgetown Public Hospital. In her younger years, her family was aware that she had the sickle cell trait, which occurs when instead of inheriting two sickle genes, a person only inherits one. People with the trait can live normal lives. However, four years ago, Candace began developing ulcers, which was an indication that she had the disease. Her step-mother, Simone Ifill, and other relatives and friends witnessed the waning of her vitality and will to live. Her father, Cleveland Ifill, who left Guyana five years ago was not around when the problems started. The more ulcers Candace developed, the deeper she sank into a deep dark hole from which she would never find a way out. She felt that she could not live without the drugs to numb the pain. One of the treatments for Sicklers is opioids. Often in Guyana people who suffer from Sickle Cell disease are accused by medical practitioners of being drug addicts. But in cases where Sicklers might become addicted, because of chronic pain and the need to numb that pain, how can they be made to suffer even more because of that? Their pain is not a choice and any addiction that occurs is also not a choice.
Candace eventually had problems acquiring treatment. It was reported that she became notorious at the hospital because she was always desperately trying to access medication. I am sure she asked herself many times, why her? No one asks to be born with Sickle Cell disease, yet innocent people are made to suffer because of it.
Her family suspected that there was some abuse of the medication and talked to her, but her life would just plummet even further into that dark hole of no return. Two months before she died, she moved out of the family home and was staying with a school friend. No one knows for certain what happened on that fateful day in September. Left in a room alone she was found unresponsive and rushed to the hospital where she remained in a coma until she died a month later. Her family was left wondering whether it was an accidental overdose or whether the young nurse intentionally overdosed.
Perhaps some good can come from her death. Maybe those of us who do not have to live with the disease can exercise more compassion towards members of the community and help in advocating for their rights. What urgently needs to be addressed is the stigma and discrimination they often experience from the medical community, especially when they are made to access care at public institutions. Though there have been some improvements, the urgency and devastating effects of the disease are still disregarded by many in the medical profession.
Just One Experience…
In July of this year, a Sickler arrived at the Georgetown Public Hospital’s Emergency Department in pain. She arrived around 11.14 am and was told to wait because there were people there before her. It is times such as these that Sicklers must depend more on their psychological strength than their physical strength. When she felt she could not bear the pain anymore, at around 1.30 pm, she had a confrontation with the supervisor. When we are in desperate situations, we often do not stop to think about our actions. Who could bear the feeling of a knife stabbing at their bones for hours with no aid? The thought alone is terrifying. At that point, there was still no intervention and a Doctor even said that she had to wait, regardless of how much she protested. Unfortunately, there are those Doctors who seem to have never heard of the ‘Do No Harm’ oath. Whether it is spitefulness or arrogance brought on by them having a God Complex, some do not seem to genuinely care about patients and therefore their priority does not appear to be the need to heal. At around 2.30 pm, they gave her an injection but from being in and out of hospital most of her life, she knew it would not help and related this to them. Still, no one listened. Desperate, she even went to see the CEO, who was empathetic. At around 3.30 pm, in tears, with heart palpitations, thinking that she would to die, she had to urgently find a solution. Low on finances, she summoned the help of the taxi driver who had brought her to the hospital to assist her in getting to Davis Memorial Hospital. A Doctor there, who is not Guyanese, saved her life. She was treated immediately, as should be the case when Sicklers arrive at the hospital in pain. Not only that, but because of her financial situation and even though Davis Memorial Hospital is a private institution, her consultation was free. The Doctor demonstrated the attitude that all doctors should have when dealing with Sicklers.
A report was made to the Ministry of Health about her experience at the Georgetown Public Hospital, but unfortunately as often happens in Guyana, no action was taken.
(To Be Continued)