PKD Life - Fall 2022 - 17

INEQUITIES,
SOLVING
IMPROVING
CARE
I
t wasn't until Cayleigh Sanders'
father died from PKD six years ago,
at age 40, that her relatives began
talking about the disease, even
though some of them had it themselves.
" That's when I came across the PKD
Foundation and started doing more
research, " says Sanders, 28, of Houston.
Sanders was diagnosed at 8. Her younger
sister has it too.
Sanders is one of seven peer ambassadors
for the PKD Foundation. This
new volunteer program prepares people
of color who have PKD to engage their
communities with culturally and linguistically
relevant content and help
them get access to resources on disease
management, treatment options, and
navigating healthcare systems.
" I decided to become a peer ambassador
for the PKD Foundation to help
spread awareness, not only for myself
but for anyone who has been affected by
PKD, " Sanders says. " My goal is to reach
underserved communities and help people
find the resources that they need. "
GAPS IN CARE
While PKD is an inherited disease that
appears to be equally present in all ethnicities
and races, there are gaps in care
How the PKD
Foundation is reaching
out to underserved
communities and
addressing disparities.
By Renee Bacher
Illustration by LJ Davids
that continue to lag for underserved
communities in the U.S., especially
Black/African American and Hispanic/
Latino populations.
Neera Dahl, M.D., Ph.D., director
of the Nephrology Clinical Trials Program
at Yale School of Medicine, sees
patients with both chronic kidney disease
(CKD) and PKD, and noticed there
were more people of color in the CKD
clinics than the PKD clinics-which
didn't make sense because PKD does
not discriminate.
In 2019, Dr. Dahl and her colleagues
published a study on revisiting racial
differences in end-stage renal disease
in the U.S., which revealed that nonHispanic
Black people with PKD may
progress more rapidly to end-stage renal
disease than non-Hispanic white people
with PKD.
" What we saw was that compared with
end-stage kidney disease from diabetes
or hypertension, there were fewer PKD
patients than expected, " she says. This
led the researchers to speculate that
Underserved
communities
in the U.S.,
especially
Black/African
American and
Hispanic/Latino
populations,
experience gaps
in PKD care.
PKDCURE.ORG
17
http://www.PKDCURE.ORG
PKD Life - Fall 2022

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