The National Kidney Foundation to host first ever conference on kids with CKD
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.
SOURCE National Kidney Foundation
