Homing in on
sickle cell disease
Monica Mitchell uses creative research and community strategies
to make sure youngsters with sickle cell disease receive the
treatment they need to lead normal lives.
BY TORI DEANGELIS
Sickle-cell disease affects one in every 500 African- American children born in the United States, and one in 12 African-Americans carries the sickle cell trait. While
there are highly effective treatments for the sometimes deadly
condition, patients don’t always have access to or comply with
the medical regimen, which includes regularly taking their
medications and keeping clinic appointments.
and organs. If untreated, sickle cell disease can cause pain,
infections, organ damage and stroke.
“While the disease is a prominent and important part of who
these kids are, it’s not all of who they are,” Mitchell says. “My
work is to understand sickle cell disease in the context of the
entire family system so we can help these children lead normal
lives. One way to do that is by helping them adhere to their
medications so they can be in school more often, for example.”
Mitchell is a pioneer in the way she has involved the
community and families in research and treatment, says Michael
R. DeBaun, MD, director of the Vanderbilt-Meharry Center for
Excellence in Sickle Cell Disease at Vanderbilt University.
“I don’t know of any other individual who has engaged the
[sickle cell] community this successfully, not just in helping
patients and their families understand the importance of
research, but in getting them actively involved,” he says. “She
has created a new paradigm, which says that individuals with
this disease should be as informed as possible … and that they
should see their interaction with the medical community,
particularly the research community, as a partnership.”
That’s especially important, he says, given African-