New Pediatric Online Community for Parents of Children with Kidney Disease

 

New York, NY—September 17, 2018— The National Kidney Foundation has launched a new online pediatric community just for parents of children with kidney disease.  The new online community, Parents of Children with Kidney Disease, is supported through the HealthUnlocked platform and is a safe and supportive space where parents can share their experiences, ask questions and get answers to what matters most.

 

 “Managing a chronic illness like kidney disease for a loved one, especially a child, is difficult and these children face a lifetime of struggles,” said Kevin Longino, CEO, National Kidney Foundation (NKF) and a kidney transplant recipient.  “Our hope with this new online community, combined with all of the pediatric resources NKF offers, is to make it easier for families.”

 

“Parents in general face challenges that are difficult to navigate, but parents of children with a chronic illness face additional worries and concerns about their child’s health and well-being,” said Kelly Cline, whose daughter Hannah had a kidney transplant at age 11.  “The fear of the unknown, the worry, and the stress can be overwhelming, but having a group of parents as support who are going or have gone through the same type of issues is invaluable.  The comfort of knowing that someone else knows what you are facing cannot be described sufficiently in words.”

 

Ten-year-old singing powerhouse and kidney transplant recipient, Angelica Hale, NKF’s Kid Ambassador, received a kidney transplant from her mother five years ago.  Angelica filmed a special video about how the new pediatric online community could helped families like hers, see it here.  “I am healthy today, but I still remember how my parents also needed help – and they needed answers fast when I was sick,” she says in the video.

 

In addition to the new online pediatric community, 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 include: Pediatric Health Information on medications, kidney health basics, tips for parents, nutrition, and coping, visit 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  www.nkfadvocacy.wordpress.com or speaknowforkids.org/blog.

 

NKF's Kid Ambassador: Angelica Hale 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 855.NKF.CARES (855.653.2273) or email nkfcares@kidney.org. 

 

Chronic Kidney Disease in Children:  Unique Challenges for Healthcare Providers and Families is a scientific workshop hosted by NKF with experts in pediatric nephrology collaborating to improve the care of pediatric patients with CKD.  It will be held this December 6-7 in Atlanta, Georgia.

 

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 these tools and resources, discounts on professional education, and access to a network of thousands of individuals who treat patients with kidney disease.

 

30 million American 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 of kidney failure. 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).

 

Almost 10,000 children and adolescents in U.S. are living with end-stage renal disease. 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. is borderline or has hypertension; 2 in 10 adolescents (average age 11) are obese; and 200,000 people younger than 20 years are living with diagnosed diabetes.