By Charissa Rice Shhh…not so loud. This is a topic or subject that not too many want to talk about. That’s funny because most of us spend a lifetime trying to do it. So why is sex and anything pertaining to it so taboo? I guess as a patient with a chronic illness that should be the last thing on my mind. I can remember when visiting my many doctors, hearing them discuss different symptoms and what I might expect with my many illnesses. I have lupus and also kidney failure. There are a lot of things that can cause my [...]
In this Issue: Dialysis Patients Secure Access to Life Saving Care Why Advocate? Going Home Beginning the Dialysis Adventure Staying Safe from Violence at Dialysis Finding Answers Through Research Living Well on Dialysis When a Kidney Transplant Fails Choosing a Partner with Kidney Disease The Sweetest Taboo Put Out the Fire! Simple Strategies to Reduce Chronic Inflammation Download PDF President's Message Dear friends, As I watch the change of seasons from winter to spring, I also see some exciting things in store for our membership. We still have our two Facebook pages, one [...]
By Erich Ditschman “Well, hello, Mr. Ditschman. How is your sex life?” This is one greeting I have never heard in my dialysis clinic. Okay, well maybe by Michael in the waiting room. And yes, I did blush. But, I never heard this once from my doctor, nurse, dietitian or social worker. In my 17-years on dialysis, sex has not been that big of a concern for my medical team, certainly not as big as keeping me alive. If you check out your dialysis clinic’s website, you will probably find a link near the bottom of the page to a “Sexuality [...]
Inside this issue you will find information about one of the rare diseases that can cause kidney disease, Fabry. You'll also find information about getting through the holidays and patient advocacy.
By, Jackson Williams, Government Affairs Director for Dialysis Patient Citizens For more than a decade, officials in Washington, DC have been experimenting with ways to reorganize Medicare to deliver better care at lower costs. Several of these “demonstration projects” have involved ESRD patients. Now, the largest such program for dialysis patients has kicked off at 13 locations across the U.S. It’s called the ESRD Seamless Care Organization, or “ESCO,” model. This article describes what one of these projects, Philadelphia-Camden Integrated Kidney Care, is doing to improve care for its patients. Philadelphia-Camden Integrated Kidney Care covers about 2,000 patients at DaVita clinics in the [...]
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 [...]