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Cystinosis: A Rare and Under-Recognized Cause of Kidney Failure

2022-03-29T13:27:12-04:00April 19th, 2021|Categories: The Kidney Citizen, What Causes Kidney Disease|

By Ladan Golestaneh, MD, MS What is Cystinosis? Cystinosis, or Nephropathic Cystinosis, is a rare genetic disease that affects boys and girls equally and causes a defect in the way that lysosomes (small organelles in cells that remove waste products) are able to remove an amino acid (protein subunit) called Cystine.1-4  The name of the defected gene is CTNS which affects “Cystinosin”, the protein that normally takes Cystine out of the lysosome. As a result of this defect, Cystine accumulates in the cells of various organs and tissues of the body and causes extensive damage. The disease is progressive, meaning it [...]

Fabry Awareness Month

2021-04-08T10:53:07-04:00April 1st, 2021|Categories: Additional Resources, eNews, What Causes Kidney Disease|

April is Fabry Awareness Month, which brings attention to a rare disease that affects about 1 in 100,000 people. So, what is it? Fabry is an inherited genetic condition, caused by a mutation on the X chromosome in the GLA gene that leads to reduced levels of the enzyme alpha-galactosidase A (AGA) in the body. This means that the body cannot break down a certain type of fat, called globotriaosylceramide (GL-3), which then continues to build-up in a way that causes the blood vessels all over the body to become narrowed. This causes damage to tissues and organs, including your kidneys! [...]

A New Look on Life

2020-12-11T12:20:56-05:00December 23rd, 2020|Categories: Diagnosis of Kidney Disease, The Kidney Citizen|

By Michael Ramirez The worst day of my life became the best day of my life. ''Your kidneys are failing," my physician said to me. My first thought, "What does that mean?" My doctor confirmed, "You need to see a specialist." I learned that a nephrologist is a kidney doctor, and that was the type of specialist I needed. I trusted my doctor so I asked, "Who should I see? Who do you trust?" My doctor referred me to his choice of nephrologist—and so I made an appointment right away. If your doctor says you need to see a nephrologist, don’t [...]

ESRD Teen Booklets Are Now Available in Spanish

2020-10-08T09:15:52-04:00October 2nd, 2020|Categories: eNews, Pediatric Kidney Disease, Spanish Materials|Tags: |

Our two popular booklets, "Tips for Teens Living with Kidney Disease" and "Kidney Disease Tips for Teens Living with Cystinosis" are now available for download in Spanish. These booklets provide information for teens who learn they have kidney disease. They include a brief overview of living with End stage renal disease, the importance of diet and medication adherence, and potential treatment methods. They also touch on feelings related to having a chronic illness, family and friends, and being a teen. Download the booklets

Care Coordination Fixes One of the Biggest Flaws in the American Health Care System

2020-12-15T14:02:04-05:00July 6th, 2020|Categories: Diagnosis of Kidney Disease, In-Center Hemodialysis, The Kidney Citizen|Tags: , |

By Gloria Rohrer, DPC Patient Ambassador As a dialysis patient, it has become clear to me that one of the biggest flaws in the American health care system is the disjointed way care is often provided to patients. If patients have chronic conditions alongside other health complications, it can be exceedingly difficult to navigate the different doctors and hospitals we need in order to receive proper care. When seeing so many different doctors at various clinics and hospitals, patients like me can suffer adverse effects if all our treatments are not designed to address our full medical history, rather than a [...]

Identifying Sepsis Risk and Symptoms

2020-12-14T16:07:51-05:00June 29th, 2020|Categories: The Kidney Citizen, What Causes Kidney Disease|Tags: |

By Marijke Vroomen Durning, RN People who live with kidney disease are more susceptible to contracting infections than the general public. A weakened immune system, frequent hospital or clinical visits/stays, and possible points of entry for infection (catheters, ports, etc.) all contribute to this increased risk. Unfortunately, some of these infections can lead to sepsis, which can be life altering, even fatal for thousands of people. Sepsis is your body’s inflammatory response to an infection. It can be any type of infection—viral, as with influenza; bacterial, as with a urinary tract infection (UTI); even fungal or parasitic. No one knows why [...]

Treatment of Hyperkalemia in Dialysis Patients

2020-05-12T15:07:13-04:00May 12th, 2020|Categories: eNews, Medication, What Is Kidney Disease|

Hyperkalemia is a potentially life-threatening electrolyte disorder and is more often seen in people who have End Stage Kidney Disease than the general public. For people WITHOUT kidney failure, potassium, an important mineral within the body, helps regulate fluid balance, muscle contractions and nerve signals. When people eat more potassium than their body needs, the kidneys filter and excrete out any extra through the urine. However, when the kidneys do not work, potassium can build up in the blood and cause hyperkalemia/high potassium. You can learn more about foods high in potassium and hyperkalemia in Issue 10 of our patient newsletter, [...]

Reflections from 45 Years on Dialysis

2020-12-15T13:58:50-05:00May 2nd, 2020|Categories: Diagnosis of Kidney Disease, In-Center Hemodialysis, Pediatric Kidney Disease, The Kidney Citizen|Tags: , |

By Jack Reynolds, DPC Board Member I have survived on in-center hemodialysis for the last 45 years. I have also received Medicare for all those years to pay for most of my dialysis and other medical needs. I currently reside outside the village of Palmyra, Iowa. One of the first group of Patient Ambassadors to advocate in Washington, D.C. in 2005, I have visited Capitol Hill many times since. Because of the cost, time and effort it takes to keep a kidney patient healthy, I feel that it is important to be aware of issues and legislation that can impact our [...]

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 [...]

5 Ways to Improve Your Heart Health

2020-04-27T21:20:26-04:00February 13th, 2020|Categories: eNews, Lifestyle, Nutrition, Physical Health, Stress Management, What Causes Kidney Disease|

If you worry that you or someone you love will get heart disease or even have a heart attack, it’s understandable. February is American Heart Month, and heart disease is the leading cause of death for men and women in the United States, according to the National Heart, Lung, and Blood Institute (NHLBI). Research shows you can lower your risk, particularly if you team up with family, friends or co-workers. This kind of social support may be the key to your success. “Studies show that having positive, close relationships and feeling connected to others benefits overall health, blood pressure, weight and [...]

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