According to a story from Greenville Online, the Greenville Health System has begun implementing a comprehensive treatment program for patients with sickle cell disease and its most severe and common variant, sickle cell anemia. One patient who is part of the program is Kaimora Smith, who is 13 years old.
About Sickle Cell Anemia
Sickle cell anemia is a genetic, inherited disorder of the blood. This disorder is characterized by an abnormality affecting hemoglobin, which is found in red blood cells and is responsible for carrying oxygen. The abnormality causes blood cells to lose their typical circular shape and instead become take on an elongated, sickle-like appearance. This is caused by a genetic mutation that may have arisen as a defense against malaria, although this benefit only occurs in people with sickle cell trait, not the disease. Symptoms begin to appear at around six months old and include swelling of the hands and feet, stroke, bacterial infections, and acute episodes of severe pain termed sickle cell crisis. Severity of disease varies, but these attacks can result in serious declines in health and organ damage. Treatment is mostly symptomatic, but bone marrow transplant has been curative in children. Life expectancy is between 40 and 60. To learn more about sickle cell anemia, click here.
Undertreated and Overlooked
Sickle cell anemia has historically been an overlooked disease, with less funding, research, and drug development than many other rare diseases, even those that affect a smaller number of people, such as cystic fibrosis. A study from 2013 showed that life expectancy had actually decline since the 1990s. Unfortunately, one reason that the disease may be over looked is due to the fact that the disease most frequently impacts African-Americans, who continue to face neglect and discrimination in the medical field.
Teamwork Makes The Dream Work
However, the Greenville program aims to change the declines in lifespan. Patients receive collaborative treatment from a team of nurses, doctors, psychologists, and social workers that work to ensure sickle cell anemia patients get the treatment they need through their childhood and into adulthood. Lack of insurance or other resources does not exclude patients from getting signed up.
Kids have seen great improvements in survival and quality of over the years, but this program wants to extend those improvements to adults. The program also works closely with the Greenville Sickle Cell Disease Community Advisory Board, a group of community leaders that are working to spread awareness of sickle cell disease in the local area.