Childhood Chronic Disease: A Family Affair
Here are the top 10 ways family members can be supportive when a child has a chronic condition.
Input Needed for Pediatric CKD Booklet
The DPC Education Center is developing a pediatric booklet for tweens and teens about having kidney disease and its treatment. If you have been living with kidney disease since childhood or are a parent of a child with kidney disease, we’d appreciate your response to this short survey by June 21st. Thanks for your input! If you were diagnosed with kidney disease as a child, click here. If you are a parent of a child with kidney disease, click here.
Premature Birth Increases Kidney Disease Risk
Researchers analyzed over four million singleton live births in Sweden during 1973-2014 and found the risk for chronic kidney disease (CKD) was doubled among births before 37 weeks of gestation and tripled among births before 28 weeks. Additionally, researchers found that the risk increased by four percent per premature week. Scientists compared the data to siblings born full-term and found the increased risk for kidney disease was not present among the siblings. The researchers concluded, "Preterm and early term birth are strong risk factors for the development of CKD from childhood into mid-adulthood. People born prematurely need long term follow-up for [...]
Psychosocial Factors Affecting Children and Families Living with Chronic Illness
During this webinar, Amy Walters, PhD, Clinical Psychologist will discuss: 1) the psychological and emotional side effects of chronic illness on children and families, 2) how illness impacts different stages of childhood development, 3) common concerns reported by parents and children and 4) ways to support children and their families in coping with chronic illness. About the Presenter Amy Walters, PhD, is a clinical psychologist and the Director of Behavioral Health Services for St. Luke’s Humphreys Diabetes Center in Boise, Idaho. Dr. Walters works with patients to overcome barriers to behavioral change, learn to cope with chronic illness, and address issues [...]
Knowledge is Key for CKD and ESRD Patients
Print out the flier At the Dialysis Patient Citizens Education Center we believe it is extremely important to educate kidney patients at all stages of kidney disease as well as their family members. We offer free, monthly webinars and conference calls on an assortment of topics related to kidney care. We work hard to help fill in the gaps for people living with kidney disease who need to learn more about their disease, treatments and quality of life to enable them to be key members of their health care team. Included is a list of educational topics for the [...]
Living with Kidney Disease: Tips for Teens on How to Cope
By Elizabeth Lewan, Communications & Grassroots Program Coordinator at the American Psychological Association Your kidneys have many functions in the body and play an important role in your overall health and wellness. They help the body eliminate harmful toxins by filtering waste and extra fluid from your blood, control blood pressure and keep your bones healthy. Although you have been diagnosed with chronic kidney disease, you can still live a meaningful and healthy life. You may be feeling scared or unsure about your health or the changes happening to your body. It may seem like you’re on an emotional roller coaster, [...]
My Personal Experience with a Rare Condition
By Mark Scirocco, Patient Ambassador I have been on in-center hemodialysis for three years. It was a rough start, as I went through 11 chest catheters in a little over a year. Two of them just fell out while I was sitting at home; the others got clogged. The last one almost killed me, stopping fluid in my upper body and head. My fistula was barely ready when they took that one out and placed a stent in my chest to allow fluid past my upper body. Three months after starting my fistula, I needed a fistulogram to open it up. [...]
Free Monthly Webinars/Conference Calls
The DPC Education Center invites people living with chronic kidney disease (CKD), end-stage renal disease (ESRD), their families and professional staff to join us for our monthly webinars. You can also join by phone or view the recordings online at a later time. The webinars are planned for the fourth Thursday of the month at 2 p.m. Eastern time zone, except for November and December when they will be held during the third week of the month. You can download monthly webinar fliers to share with others and/or register for webinars at www.dpcedcenter.org/news-events/education-webinars. Join by phone by calling 1-877- 399-5186 and [...]
Advance Care Planning
By David Mahoney, MD As a member of Dialysis Patient Citizens, you have chosen to become involved, speak up for what is important to you and take charge of the management of your health. Dialysis modality, diet, medications, exercise, management of your other health-related issues, all require your informed decision-making and action. But despite this high level of involvement in their health care, few dialysis patients have addressed the issue of advance care planning. “I don’t want to talk about that now.” “That’s for sick people, and I am doing well.” “That really scares me.” “I am NOT ready to talk [...]
Insights from the Dialysis Patient Citizens 2018 Patient Survey: Patients’ Priorities for Quality Measures and New Innovations in ESRD Care
By Jackson Williams, Director of Regulatory Affairs and General Counsel, Dialysis Patient Citizens Dialysis Patient Citizens (DPC) thanks everyone who completed its 2018 Patient Survey. It is another way to make your voices heard. We use our patient survey to get your input on current issues and to convey your opinions to policymakers in Washington, DC. This year, our survey included questions on two recent developments in Washington: Medicare’s “Meaningful Measures” Initiative: In early 2018, Medicare officials announced plans to reduce the number of quality measures it uses to hold health care providers accountable. This meant that for dialysis care, the [...]
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