Wellness and Mental Health While Living with Rare Disease

2022-05-09T13:15:48-04:00April 25th, 2022|Categories: Lifestyle, Mental Health, Physical Health, Stress Management, The Kidney Citizen, What Causes Kidney Disease|

  By Maya Doyle, MSW, PhD Cystinosis is a rare lysosomal storage disorder (1) that is typically diagnosed in childhood and typically results in kidney failure and progression to dialysis and/or kidney transplant. In the United States, a disease is considered rare if it is affects fewer than 200,000 Americans. According to the National Institutes of Health (NIH), there are approximately 7,000 rare diseases affecting between 25 and 30 million Americans – this means 1 in 10 people may be affected by a rare condition (2). The experience of a rare condition can be very isolating because of the [...]

My Experience as a Kidney Patient in CKD, Dialysis, and Transplant

2022-05-09T12:48:26-04:00April 25th, 2022|Categories: Diagnosis of Kidney Disease, Dialysis, Home Hemodialysis, In-Center Hemodialysis, Kidney Transplant, Stages of Kidney Disease, The Kidney Citizen|

By Orlando A. Torres After a 30-year battle with chronic kidney disease (CKD), in 2016 I had Stage Five kidney failure. This was the end of a three-decade battle which took countless hours of treatment. For years, I had been followed medically for CKD, having a special test done monthly and eating a special diet. As a CKD patient, my condition affected other organs in my body. The number of regular activities I could do also declined, but I never quit and refused to accept those limitations. I never let CKD limit what I did. I think it is [...]

Chronic Kidney Disease and Hyperkalemia: What You Need to Know About High Potassium!

2022-03-29T15:45:34-04:00December 17th, 2021|Categories: Nutrition, Stages of Kidney Disease, The Kidney Citizen|

By Sue Hellie The challenges faced this past year have redefined what it means to live with chronic kidney disease (CKD). People living with kidney disease and other severe chronic conditions are at higher risk for more severe illness, and they’ve had to take extra precautions to ensure their safety and wellbeing. However, this past year has presented many people with the opportunity to educate themselves about their health and potential associated conditions that come with living with CKD. One condition that is less understood by many living with CKD is hyperkalemia. What is hyperkalemia? Hyperkalemia is a condition some people [...]

Better Late than Never: Genetic Diagnosis After Major Medical Events

2022-03-29T15:19:53-04:00December 17th, 2021|Categories: Diagnosis of Kidney Disease, The Kidney Citizen, What Causes Kidney Disease|

By Dawn Laney, MS You have two doctors for your kidneys, one for your heart, one for your head, one for your eyes, and one for your overall health. You are tested, biopsied, and imaged from head to toe on a regular basis. So, when one of these doctors suggests a referral to genetics, you may wonder, “Another doctor? Is it still worth seeking a genetic diagnosis as an adult who has already had kidney failure?” The answer is a resounding “Yes!” One way to improve care in a medically complicated situation is by learning if an underlying genetic condition could [...]

Polycystic Kidney Disease (PKD)

2022-03-30T13:50:41-04:00December 17th, 2021|Categories: The Kidney Citizen, What Causes Kidney Disease|

By Mirjana Dimitrijevic, M.D. and Keith A. Bellovich, DO There are two major forms of PKD: autosomal recessive polycystic kidney disease (ARPKD) and autosomal dominant polycystic kidney disease (ADPKD). ARPKD is uncommon and is typically diagnosed in infancy or in utero. Autosomal recessive means that the mutated gene must be present in both parents (carriers) with a 1 in 4 chance that a child will inherit an abnormal gene from both parents and have the disease. In ADPKD each child of an affected parent has a 50% chance of inheriting the disease. ADPKD is the most common inherited kidney disease, characterized [...]

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 [...]

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