Sickle Cell... Do you have the trait?
Many people think if they're not African American they don't need to worry about sickle cell
disease. But the truth is sickle cell can affect many races and ethnicities. Do you know your
sickle cell status? Not knowing may increase your risk of passing the disease on to your
children. A RICHES partner in Mecklenburg County is working hard to educate the community
about sickle cell.
Sadie Jordan, RICHES Member and Program Manager of the Community
Health Interventions and Sickle Cell Agency (CHISCA) of Mecklenburg
County, is working to dispel the myth that only African Americans need to
worry about sickle cell disease. The disease can also affect those of
Turkish, Indian, Hispanic, Italian and other descent. "11% of the clients we
serve are of non-African American descent," she said. "Among the highest
are Hispanics (1.3% of our clients) and those that are multi-racial (8%)."
Founded in 1971, CHISCA now offers services to residents of Cumberland,
Hoke, Robeson, Harnett and Mecklenburg counties with hemoglobin
diseases. In 1988 it expanded its programs to include other health
conditions such as diabetes, HIV and sexually transmitted infections (STIs).
CHISCA offers testing, counseling, advocacy and educational sessions for families and training
seminars for healthcare professionals.
"Our goal is to increase our client's
knowledge on the symptoms,
prevention, diagnosis and treatment of
sickle cell disease," she said. "We also
strive to increase community awaren
and promote the collaboration and
training among agencies to implem
and develop documented best practice
CHISCA has 134 individuals enrolled
and actively participating in programs
within Mecklenburg County, but would
like to see an enrollment increase among
individuals carrying the sickle cell trait.
"There exist an unknown number of
individuals with sickle cell trait and we
want to provide them with genetic
counseling to help them make informed decisions concerning their future," Jordan said. "If both
parents have sickle cell trait, their child has a 1 in 4 chance of having sickle cell disease."
Yellowing of the eyes, dizziness, pain in the neck, back or belly are all symptoms of sickle cell
disease, a condition which affects nearly 80,000 Americans living in the U.S. and millions of
individuals worldwide. Sickle cell disease is an inherited blood disorder that affects the red blood
cells causing the cells to become crescent or sickle in shape.
Since 1985 all babies in North Carolina are screened for sickle cell disease at birth, but after the
baby is born it is too late for preventative measures and parents are often overwhelmed by the
diagnosis. However, new research offers hope for those living with sickle cell disease.
"When I talk with parents about their child and sickle cell disease they begin to understand the
physical drain and the emotional stress they will experience," Jordan said. "They also understand
the pain their child will have to endure. However, thanks to new medical advances, anyone with
sickle cell disease can live longer if they pay attention to their medical needs."
CHISCA hopes to introduce the CareCard to those living in Mecklenburg County soon. This
identification card can be used by sickle cell patients to alert healthcare providers of their
condition and medical home. "We are currently working on funding," said Jordan. "But we plan
to use Cumberland County's CareCard as a prototype for the program."
In addition, to the CareCard, Jordan is looking forward to introducing the RICHES Health
Journal Toolkit to clients. The easy to use flipchart covers a variety of health and wellness topics.
Jordan said it is important for those living with sickle cell disease to eat healthy, exercise and
keep track of their health status and test results. "The Health Journal Toolkit is wonderful in that
it covers topics ranging from reproductive health to general health and wellness," she said. "The
My Health Journal and Body Maintenance Manual booklets are excellent sources for
documenting questions about treatment and medical history."
Through the statewide RICHES network, coordinated by the Foundation, Jordan hopes to
connect with others looking to eliminate health disparities in North Carolina. "I hope to work
with others to help the voice of the sickle cell patient be heard and encourage others to get tested
for the sickle cell trait."
For more information on RICHES and how you can join, please visit the Foundation's Web Site
or email RICHES@NCHealthyStart.org.