MEDICAL DESERT FOR SICKLE CELL DISEASE
Sickle-cell disease was once a childhood ailment, simply because many children with the condition died before reaching the age of majority. But, since 1972, when the US National Sickle Cell Disease Program was founded and specific funding became available, the United States has managed to drastically reduce childhood deaths from the disease. In the United States, between 1979 and 2005, the death rate for children with the disorder dropped by an average of 3% per year. However, due to the focus on childhood sickle-cell disease, the system failed to plan for these children to grow up and become adults. Also, due to the complexity and false accusations of addiction associated with sickle cell disease, most Hematologist refuse to care for sickle cell patients, leaving a population of healthy well cared for children to face a medical desert. Hence the need for a “Transitional Youth Program.”
YOUTH TRANSITION PROGRAM
In its simplest term, Transition is defined by the process in which the total care of children and adolescents with chronic medical conditions are transferred to the adult teams.
Quest to Cure's Solution!
BUILD A METROPOLIS IN THE DESERT
Quest to Cure’s solution to the Youth Transition problem is simple. Our program will teach transitioning youths to take control of their own health by assisting them with cultivating positive relationship in their community, school/college, at their jobs and most importantly with hospitals so that Adult Hematologist will see the value in caring for Sickle Cell Patients.
We have created a curriculum that addresses the psychosocial, vocational, educational and medical needs of a transitioning youth. The curriculum is built around survey questions sent to adult hematologist about what they believe patients should know about their disease before entering the adult population. Our goal is to assure that each transitioning youth is ready for the world. And every medical personnel is comfortable with caring for individuals who suffer from sickle cell disease.
Our curriculum is broken down into three groups and three categories which we believe must be accomplished before youths can fully be prepared for transitioning into the adult world.
Youth Transition Ages 12-15
A youth should begin their transitioning to adult care at ages 12. Our team will introduce children between the age of 12-15 to our transition policy as well as educate them on the basics of sickle cell disease along with the basics about the medical, psychosocial and academic aspects of their lives.
Youth Transition Ages 16-18
The Quest to Cure team provides our older adolescents between the age of 16-18 with a broader understanding of sickle cell disease. We prepare them for the next steps during and after high school. We open their eyes to the difference between drug dependency and drug addiction and the importance of adhering to pain plans.
Youth Transition Ages 19 – Age of Transition
Quest to Cure supports our young adults in navigating the medical system and beyond to assure a successful transition. We teach the importance of self-advocacy and identifying their support systems when they are not able to speak for themselves