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Wellness and Mental Health While Living with Rare Disease

2024-03-28T20:58:14-04:00April 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 [...]

Living with Chronic Illness and Bipolar: A Story of Resilience

2024-03-28T20:58:19-04:00April 25th, 2022|Categories: Mental Health, The Kidney Citizen|

By Ashley Abedini I opened my eyes to find myself lying on a hospital bed. This was not exactly a new experience for me; I have a chronic illness called Cystinosis, a metabolic disorder that has led to health issues, most notably kidney failure. As a result of this, I had to go on dialysis for about a year, leading to frequent hospital stays. I was diagnosed at just six months, so it is something that has been a pivotal part of my life. The hospital bed, cold blank walls, and countless nurses were a familiar sight. This hospitalization [...]

How to Move Out of Loneliness and Isolation

2024-03-28T20:58:20-04:00April 25th, 2022|Categories: Mental Health, Stress Management, The Kidney Citizen|

By Rebekah Palmer Oftentimes, people whose bodies live with rare diseases and chronic illness are not only separated from their peers and society, but feel separate from their peers and society. This is especially true regarding peers who are considered able-bodied, as well as a society that is inherently ableist. People who do not live with chronic illness do not always know the existence that is lived regularly with hospital and clinic visits, and the consumption of treatment and medications. It can be what we see and hear on media and online when it comes to how disabled and [...]

New Medicare Initiative to Cover Costs of OTC COVID-19 Tests

2024-03-28T20:58:26-04:00April 22nd, 2022|Categories: eNews, Physical Health, Staying Healthy|Tags: |

Beginning April 4, 2022, Medicare now covers the cost of up to eight over-the-counter (OTC) COVID-19 tests per calendar month for Part B and Medicare Advantage participants. It is important to note that Medicare will not cover OTC COVID-19 tests for patients who only have Medicare Part A (Hospital Insurance) coverage, but they may still be eligible for free tests through other programs. Medicare will cover the costs of these tests until the COVID-19 public health emergency (PHE) comes to an end. Patients can get the tests through any participating pharmacy or health care provider. A partial list of participating pharmacies [...]

Living With Painful Diabetic Peripheral Neuropathy (PDPN)

2024-03-28T20:58:29-04:00April 12th, 2022|Categories: eNews, Mental Health, Physical Health, Resources|

Living with diabetes can be a challenge all on its own, in addition to the complications that can come with it. Painful diabetic peripheral neuropathy (PDPN) is a common type of diabetic neuropathy that occurs in one-fourth of those with Type II Diabetes and is characterized by feelings of pins and needles, prickling, tingling, numbness, or shooting pain, most commonly in the feet. The American Chronic Pain Association has many PDPN resources for both patients and caregivers. There is a PDPN Conversation Guide, which can help patients communicate with their healthcare provider about the location, specific feelings, and severity of their [...]

How to Care for Yourself When You’re a Caregiver

2024-03-28T20:58:33-04:00March 8th, 2022|Categories: eNews, Lifestyle, Mental Health, Nutrition, Physical Health, Quality of Life, Staying Healthy, Stress Management|

Being a caregiver is a huge responsibility – whether you’re a parent, spouse, or sibling, being fully responsible for the well-being of someone else can be a full-time job. When you also need to juggle work or raising children as well, it is no wonder that the caregiver’s needs are often what gets neglected. Studies have shown that no matter the age, sex, race, or ethnicity of the caregiver, all are more likely to be sleep-deprived, unable to exercise regularly, and have poor eating habits.  They are also less likely to keep up with doctor’s appointments for themselves or allow themselves [...]

Identifying Health Misinformation

2024-03-28T20:58:34-04:00March 1st, 2022|Categories: eNews, Immunizations, Lifestyle, Mental Health, Physical Health|Tags: |

Over the last two years, people have been exposed to a lot of information, from many different sources, regarding COVID-19. There are many reputable sources for health information, such as the Center for Disease Control (CDC) and World Health Organization (WHO). However, there has been a recent rise in health misinformation, which caused confusion about vaccination and other public health measures, such as masking and social distancing. Although health misinformation is not new, with more people having access to the internet and various social media platforms, it has spread in recent years at an unprecedented rate. In order to keep yourself, [...]

COVID-19 and Patients with Kidney Disease on Dialysis

2024-03-28T20:58:35-04:00February 25th, 2022|Categories: Dialysis, Employment, eNews, Immunizations, Kidney Transplant, Lifestyle, Mental Health|Tags: |

By Alan Kliger, MD Updated March 18, 2022 I am writing this mid-March 2022, as the last peak of COVID infection with the Omicron variant has rapidly fallen in every US state, but wastewater analysis has shown places in the US where virus infection in some communities is rising again. A new sub-variant, BA.2 is making up about 23% of cases. Abroad, the United Kingdom is seeing increasing hospitalizations with COVID infection, and many locations in the far east have raging infections. The effects of the surge in Omicron cases around the world this past winter have deeply affected [...]

Over-the-Counter COVID-19 Tests to be Covered Through Medicare

2024-03-28T20:58:37-04:00February 4th, 2022|Categories: eNews, Quality of Life|Tags: |

Beginning in early spring, those with either Original Medicare or Medicare Advantage (MA) will be able to get over-the-counter COVID-19 tests for free. The tests will be available through eligible pharmacies and other participating entities, with Medicare beneficiaries being able to get up to eight FDA approved or authorized tests per month. This announcement is part of the Biden-Harris Administration’s ongoing efforts to expand access to free testing for Americans. Until this option is available, people with Medicare can access free tests through the following channels: Request four free at-home tests that will be delivered to your house through: https://www.covidtests.gov/ Find [...]

How to Have Difficult End-of-Life Conversations

2024-03-28T20:58:38-04:00January 27th, 2022|Categories: eNews, Mental Health, Quality of Life, Stress Management, Uncategorized|

Although death is an inevitable part of life, it can be a difficult subject to discuss with loved ones. We worry about upsetting our family or seeming too morbid, but having these conversations can actually be extremely helpful in minimizing the stress of loved ones once we’ve passed. Especially with the COVID-19 pandemic, people may not have as much time from receiving a diagnosis to when they die, and many families have found themselves in situations where they don’t know their family member’s last wishes. For these reasons, it has become even more important to discuss advance care planning with our [...]

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