Sickle Cell Association works to create positive, lasting change
When a 26-year-old declared he would die in hospital it was difficult to believe. There was no gunshot wound, visible signs of trauma, or apparatus attached to him indicating he was under critical care. Twenty minutes later, after calling his mother, the father to a two-year-old took his last breath in Kayla Mortimer’s arms.
“I could not sleep for a week after that,” recalled Mortimer, the Bahamas Sickle Cell Association’s (BSCA) new president. “Every time I closed my eyes, I would hear his voice … see his face.”
Since last September, 12 persons, including that young man, have died from the inherited red blood cells disorder known as Sickle Cell Anemia, Hemoglobin S or SS disease, according to the association.
Sickle cell has robbed families of little ones, but in more common scenarios, the disease has taken a higher number of mothers from children, many of them toddlers, said the organization with just over 200 members in New Providence, Grand Bahama, Abaco, Exuma and Eleuthera.
Most “warriors” – the association’s name for its members, suffer from sickle cell crises – the pain which could range from manageable to excruciating brought on by misshapen red blood cells getting stuck in their blood vessels, blocking the life-sustaining fluid from reaching parts of the body. Over time it could result in bone and organ damage.
Still, even in the face of life-threatening conditions some put off going to emergency rooms, knowing once there they would likely face another battle – convincing staff they are not drug addicts faking symptoms to score painkillers.
“Unfortunately, it seems there are some medical personnel who are not as knowledgeable about the disease and it shows in the level of care they provide,” said Nadine Sawyer, the association’s new vice president whose daughter is afflicted with Sickle Beta Plus Thalassemia (SB+ thalassemia) a “mild” form of the sickle cell disease.
An inherited condition, the “plus” indicates that a patient’s blood has a below normal amount of hemoglobin. What is present is the abnormal hemoglobin called hemoglobin S (sickle hemoglobin). This differs from sickle beta 0 thalassemia, in which a person has no normal haemoglobin.
When she began making hospital visitations in January, Sawyer, who utilizes private care for her daughter, came face to face with obstacles warriors confront in a public health system setting – a lack of prompt patient care and challenges with the availability of all medication.
In battling a disease that gets complicated very quickly, every second counts. The eponymous sickle shaped blood cells do not deliver oxygen to organs and tissues like healthy blood cells do, which could cause serious damage over time.
While recognizing the public health system has the mammoth task of caring for the uninsured and under-insured masses seeking medical services, the BCSA said healthcare practitioners must remain ever mindful of the fact that off the chart pain drive “sicklers” to seek emergency treatment in hospital.
Ideally, the BSCA would like to move The Bahamas closer to worldwide norms where sickle cell patients receive treatment within 20 minutes. In many cases, “sicklers” in crises wait hours on end for pain relief.
The association would also like to see more healthcare providers educated specifically on the disease, especially those on call in the Accident and Emergency Department.
“We have to raise awareness not only in the medical community, but also with teachers, employers and the general public at large that we live in pain every day, but we can live and be productive citizens,” said Mortimer, whose newly minted college graduate daughter is a “sickler”.
Treatment, she said, must be specialized for each warrior as no two “sicklers” experience is the same.
Also topping the new board’s agenda is the launch of a national registry to determine the number of individuals afflicted with the disease and carriers of the sickle cell trait.
“Sickle Cell disease is not a death sentence. We have a 70-year-old ‘warrior’ in Freeport,” said Mortimer. “Creating the right environment makes a difference.”