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 [...]

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! [...]

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 [...]

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 [...]

November is National Diabetes Month

2020-04-27T21:20:50-04:00November 8th, 2019|Categories: Additional Resources, eNews, Lifestyle, Nutrition, Physical Health, What Causes Kidney Disease|Tags: |

Diabetes is one of the leading causes of disability and death in the United States. One in 10 Americans have diabetes — that’s more than 30 million people. And another 84 million adults in the United States are at high risk of developing type 2 diabetes. To raise awareness about diabetes and healthy living, we are proudly participating in American Diabetes Month. Around one in three adults with diabetes has chronic kidney disease. Depending on your age, weight, and other factors, you may be at higher risk of developing type 2 diabetes. The good news is that making healthy changes can [...]

Treatments and Modality Options for Kidney Disease

2020-04-27T21:20:50-04:00October 21st, 2019|Categories: Diagnosis of Kidney Disease, Early Intervention, eNews, Home Hemodialysis, In-Center Hemodialysis, Kidney Transplant, Peritoneal Dialysis, Stages of Kidney Disease, Symptoms, Webinar, What Causes Kidney Disease|

During this webinar you will learn: 1) how kidneys work, 2) about chronic kidney disease stages and symptoms, 3) how to slow progression, 4) end stage options for treatment and 5) about accesses. About the Presenter: Joanne Smith is a DPC Education Center Advisory Council member and has had multiple positions in the dialysis field since receiving her RN degree, ranging from Staff RN to Director of Nursing to Home Therapies Manager. She is currently a Kidney Care Advocate responsible for educating CKD and ESRD patients on kidney disease and options for treatment, focusing specifically on home dialysis. Unlike in other nursing [...]

Resources for People with Diabetes and Kidney Disease

2020-04-27T21:20:50-04:00September 30th, 2019|Categories: Additional Resources, eNews, Nutrition, Physical Health, What Causes Kidney Disease|Tags: |

If you missed last week's webinar on diabetes and kidney disease, the recording is now available. In addition, below is a handout to accompany the presentation. Herbs Some of these articles provide information about what some people have tried, but the overall research is not necessarily strong. Some of these could be an option for you, but remember: IT IS VERY IMPORTANT TO CHECK WITH YOUR DOCTOR BEFORE USING ANY ALTERNATIVE TREATMENTS.  Herbs for Diabetes: https://www.diabetesselfmanagement.com/blog/herbs-for-diabetes/ Bitter Melon, Diabetes (one of the speaker's favorites): https://www.diabetesselfmanagement.com/blog/bitter-melon-diabetes/ Apple Cider Vinegar and Diabetes: https://www.diabetesselfmanagement.com/blog/apple-cider-vinegar-and-diabetes/ Six Supplements for Diabetes:  https://www.diabetesselfmanagement.com/blog/six-supplements-for-diabetes/ Kidney Diet Diabetes Diet [...]

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