TRANSITION FROM PEDIATRIC TO ADULTHOOD IN SICKLE CELL PATIENTS

Before 1970s even in the industrialized world the life expectancy of a person with sickle cell was 14 years. Although most sickle cell warriors in Sub-Saharan Africa, still die before 5 years of age, but at least a reasonable number can transition to adulthood. Because most of the people with sickle cell disease died in their infancy the health-care was concentrated in caring for children and young adolescents and young adults.

Sickle cell has been considered a childhood disease. Most pediatric departments have well organized sickle cell medical services, but most adult hospitals lack the facilities for the adult patients.

The major challenge in sickle cell management is transitioning from pediatric to adulthood. Most sickle cell warriors find it extremely difficult to "accept life" as it is. According to my observation severe crises occurs when approaching adolescent/teen years. During this period the body wants to behave like other bodies at the same age yet its growth speed is slow. Girls want to see their breasts and hips grow. For boys they want to see their voice deepens. The slow response to growth and peer pressure from colleagues leads to stress and depression. Often some warriors find themselves excluded from their peers because they cannot keep up with the pace of body development. That's where the myth of people with sickle cell disease are anti social is born. I have been asked several times why sickle warriors are anti social but that will be a topic of another day. 

The major challenge for transition is lack of health care transition from pediatric to adulthood. Most of the doctors and nurses who handle people with sickle cell are pediatrics who are specialized in treating children. These are people who understand children not adult. If a person is blessed to survive childhood challenges you find yourself in a position where al most nobody "understands" you. In this case warriors find themselves out of specialized treatment centers. Most sickle cell warriors get lost in the transition from childcare to adult care.

Patients with sickle cell disease who transition from childhood to adulthood continue to develop physical complications. They also start to be affected by the disease psychologically.

While there are many advances in the treatment of sickle cell, there are still challenges in ensuring that the medical system and psychosocial system supports timely access to needed preventive and disease management protocols.

Due to lack of comprehensive care programs for adults and young adolescents with sickle cell, are forced to rely on emergency rooms to manage acute pains.

There is a need for comprehensive transition care programs to cater for young adolescents and adults with sickle cell disease. This is to make sure that transition programs are developed and education about transition can begin at an early age.

I understand the transition for most people is not smooth. Please share with us your transition journey.


Love Life!
Lea