New Resources for Teens

2020-04-27T21:20:25-04:00March 2nd, 2020|Categories: Additional Resources, Diagnosis of Kidney Disease, eNews, Fact Sheet, Home Hemodialysis, Humor and Laughter, In-Center Hemodialysis, Kidney Transplant, Lifestyle, Medication, Nutrition, Pediatric Kidney Disease, Peritoneal Dialysis, Stress Management, Support, Symptoms|Tags: |

These booklets were developed for tweens and teens who learn their kidneys are not working and they will need dialysis or a transplant. The booklets provide a brief overview of coping with kidney disease, being part of their health care team, the importance of diet, taking medication, and treatment methods. They also touch on feelings related to having a chronic illness, family and friends, and being a teen. The development of both booklets included input from kids currently on dialysis, parents, adults who had kidney disease as children, and nephrologists.  Although both booklets are similar, one focuses on teens who learn [...]

Cystinosis, One of 7,000 Rare Diseases

2020-04-27T21:29:40-04:00May 28th, 2016|Categories: The Kidney Citizen, What Causes Kidney Disease|Tags: |

By Terri Schleuder, VP of Education & Awareness, Cystinosis Research Network Statistically, there are over 7,000 rare diseases in the United States that collectively impact 30,000,000 people. This is the story about one of them, and an important one for kidney disease patients as nearly all cystinosis patients lose their kidney function. Also, recent data suggests a high incidence of underdiagnosis and carriers among dialysis patients. Nephropathic Cystinosis is a rare metabolic, genetic disease that affects about 500 people in the U.S. and about 2,000 worldwide. Cystinosis occurs in a child when he/she inherits the recessive gene, identified in the late 1990’s [...]

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