NEW YORK, Dec. 5, 2018 /PRNewswire/ -- Living with
kidney disease as an adult is difficult, but living with kidney
disease as a child, is almost unbearable, according to Sarah Finlayson, 51, who was just 21 months old
when her kidneys failed.
"I was sick, and I didn't know why," Sarah says. "My parents
never talked about it at home. I didn't know about diet and
nutrition. I was living in the dark. And, I was bullied a lot in
school, especially when I was sick. It was such a different
experience than being an adult kidney patient."
Almost 10,000 children and adolescents in the U.S. are living
with end-stage renal disease (ESRD). They are 30 times more likely
to die than healthy children. Young adults with ESRD since
childhood have a life expectancy of 38 years if they are treated
with dialysis, and 63 years if they receive a kidney transplant.
Many more have conditions that dramatically increase their risk for
kidney disease and kidney failure: 1 in 10 youths in the U.S. has
hypertension; 2 in 10 adolescents (average age 11) are obese.
The NKF wants to do something about these alarming
statistics.
At the first ever NKF Scientific Workshop on CKD in Children on
Dec. 6 and 7 in Atlanta, dozens of professionals in pediatric
nephrology, patients, and their parents will gather to use recent
children-focused research, the needs inherent in stories like
Sarah's, and new ideas from the meeting participants to make
recommendations that will improve the care for kids with the
overwhelming disease.
"With this first conference, we are putting our stake in the
ground to fight pediatric CKD," says NKF Chief Medical Officer Dr.
Joseph Vassalotti, MD. "No child
should have to live with the burden of chronic kidney disease. But
if they have it, they certainly should count on us to help them
live as normal of a childhood as possible."
Dr. Bradley A. Warady, MD,
Director, Division of Nephrology, Children's Mercy Kansas City and
Professor of Pediatrics University of
Missouri – Kansas City School of Medicine, and Dr.
Susan Furth, MD, PhD, Director,
Division of Nephrology, Children's Hospital of Philadelphia and Professor of Pediatrics and
Epidemiology Perelman School of Medicine at the University of Pennsylvania, will co-chair the
conference.
"Well-controlled clinical trials in children with CKD are
scarce, due to the small population and their exclusion from most
therapeutic studies," Warady says. "Therefore, recommendations for
clinical care in pediatric nephrology are most often based on small
trials and expert opinion, with the latter commonly the product of
little published evidence. The time is right to make every effort
to enhance the care of children with CKD."
The conference in Atlanta will
be attended by top pediatric nephrologists and other kidney-related
doctors, social workers, dieticians, nurses, parents and patients
and is by invitation only. They will meet for two days of lectures
and breakout sessions.
"This conference is designed to bring together what we know,
what we can do with what we know and what we need to know regarding
the unique challenges of caring for children with CKD," Dr. Furth
says.
Children with CKD often do not understand what the illness means
and can become depressed as they try to sort through the demanding
medical condition, especially if they think no one understands
them.
Traci Kozak-Krist is a parent of
a 17-year-old kidney patient. Both she and her husband gave their
son one of their kidneys. Traci will also share with the
professionals at the conference her experience as a parent. She
wants them to know that parents and patients need details in
laymen's terms.
"My husband and I are no longer afraid to ask a lot of
questions," Traci says. "If we don't get it, we ask again and
again. Every situation is so different, and it is very important
for parents to understand exactly what is going on."
About 700 children a year receive a kidney transplant and more
than 1,000 children are waiting for a donated kidney. The leading
cause of kidney failure in children during 2012-2016 were
congenital anomalies of the kidney and urinary tract (CAKUT),
cystic, hereditary and congenital disorders, and both primary and
secondary causes of glomerular disease. Urinary tract infection can
also lead to kidney infections, which can forever damage the
kidneys.
NKF offers a wide range of resources and programs for pediatric
patients and families covering everything from how to parent a
child with kidney disease to finding advice on medication and
nutrition, all these resources are available free to families.
Patient and Family Resources
NKF has introduced a new online pediatric community called
"Parents of Children with Kidney Disease." It is supposed through
the HealthUnlocked platform and is a safe and supportive space
where parents can share their experiences, ask questions and get
answers.
Pediatric Health Information on medications, kidney health
basics, tips for parents, nutrition, and coping, are available at
kidney.org/kids. NKF has also partnered with the American Academy
of Pediatrics (AAP) and the American Society of Pediatric
Nephrology (ASPN) to develop additional pediatric and family
content for our respective websites. Pediatric Kidney Disease Blog
Series is a partnership with the Children's Hospital Association
and features NKF volunteers sharing their stories about having,
growing up with, or parenting a child with pediatric
CKD. Access the blogs at https://nkfadvocacy.wordpress.com/ or
speaknowforkids.org/blog.
NKF's Kid Ambassador
Angelica Hale, former runner up
in "America Got Talent," speaks directly to other children
facing kidney disease in a special PSA; her family also shares
their experience dealing with kidney failure and kidney
transplantation. These videos are also available at
kidney.org/livingdonation. NKF Cares offers support for families
affected by kidney disease by email and phone, in both English and
Spanish. Call toll-free at 1.855.NKF.CARES, (1.855.653.2273) or
email nkfcares@kidney.org.
NKF Professional Membership
NKF also offers a variety of resources and educational programs
for healthcare professionals including: KDOQI Nutritional
Guidelines for Children with CKD, Council of Nephrology Social
Workers (CNSW) Pediatric Toolkit, Pediatric Quality Assessments and
Process Improvement: QAPI from Soup-to-Nuts Continuing Education
Activity, NKF Kidney Disease Outcomes Quality Initiative, Pediatric
GFR (Glomerular Filtration Rate) Calculator, Pocket Guide to
Nutritional Assessment of the Patient with CKD, and a mobile app to
accompany the Pocket Guide. Healthcare professionals can join NKF
to receive access to tools and resources for both patients and
professionals, subscriptions to professional journals, discounts on
professional education, and access to a network of thousands of
individuals who treat patients with kidney disease.
Kidney Disease Facts
In the United States 30 million
adults are estimated to have chronic kidney disease—and most
aren't aware of it. 1 in 3 American adults are at risk for chronic
kidney disease. Risk factors for kidney disease include
diabetes, high blood pressure, heart disease, obesity and family
history. People of African American, Hispanic, Native
American, Asian or Pacific Islander descent are at increased risk
for developing the disease. African Americans are 3 times more
likely than Whites, and Hispanics are nearly 1.5 times more likely
than non-Hispanics to develop end stage renal disease (kidney
failure).
About the National Kidney Foundation
The National Kidney Foundation (NKF) is the largest, most
comprehensive, and longstanding patient-centric organization
dedicated to the awareness, prevention, and treatment of kidney
disease in the U.S. For more information about NKF, visit
www.kidney.org.
Facebook.com
Twitter:@NKF
www.kidney.org
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SOURCE National Kidney Foundation