AT HOME WITH AAKP - February 2020
Rare Disease Day is February 29th

AAKP will be participating in Rare Disease Day on February 29th.  Many kidney patients have one of the 6K+ rare diseases. AAKP supports research and innovations to better identify, manage and treatment rare diseases. Learn more about AAKP's Fabry Disease Diagnostic Testing and Education Program .  
Also, learn more about AAKP's Cystinoisis Scholarship Program with a new scholarship application cycle starting February 29th!

This year, the theme is Equity.  The information below is from the Rare Disease Day Fact Sheet.
 
What equity means for people living with a rare disease? Equity in practice means meeting people's specific needs and eliminating barriers preventing their full participation in society. For people living with a rare disease equity means social opportunity, equitable access to health and social care, diagnosis and treatment. 
 
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In This Issue
Consider a subscription to aakpRENALIFE magazine for just $12/yr for your loved one. Click the image to read our latest issue online: 

Disparities in Health Outcomes with Dialysis in the United States Vary by Race
Written for CJSAN by Daronta Briggs, AAKP Ambassador

As a veteran and a black man with a history of ESKD at the age of 46 years old, I never thought that my illness and treatment would be analyzed in studies. And yet, on a hot summer day in Hampton, Virginia, while at the Veterans Medical Center Dialysis Unit in July 2008, I remember becoming a statistic in "Racial and Ethnic Variations in Mortality Rates for Patients Undergoing Maintenance Dialysis Treated in US Territories Compared with the US 50 States" (1).
 
Racial and ethnic groups (2), as well as the same groups living within various geographic locations (3) in the United States, are more likely than nonminority groups to develop kidney failure, often treated with dialysis (4). Since I started maintenance dialysis treatment in 2008, the rate of ESKD among both minority and nonminority groups has increased.
 
Based upon my observations, upon receiving medical care for 4.5 years of my life, I have witnessed an increase in the mortality rate among fellow veterans on dialysis

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Speak Up: Making Dialysis Safer for Patients Video

WATCH NOW!  CDC Making Dialysis Safer for Patients Coalition & AAKP release new, partner video for dialysis patients and dialysis staff on the importance of speaking up to prevent infections and improve patient safety.
 
Patients on dialysis and dialysis staff are encouraged to watch and share this video. Everyone has a role to play in preventing infections and improving dialysis patient safety. Infections can be serious and sometimes life-threatening. Many patients experience anxiety, fear, and uncertainty related to their dialysis treatment and preventing infections.
 
This video follows the journey of two patients on dialysis who feel empowered to speak up and share concerns about their treatment in order to prevent infections. The video also highlights ways dialysis staff can create an environment where patients feel safe speaking up.

Click the button below to read more and watch the video. 
AAKP Blog Post: Easy Ways to Eliminate the Stress of Traveling for Dialysis Patients
By Barbara Wallace, Renal Dialysis Nurse,  Irish Holiday Dialysis 
     
Travel, whether for vacation or business, always seems to involve a degree of stress but there are extra considerations for kidney patients living with dialysis. Here's a checklist to help with travel planning to help things run more smoothly before you leave home, After all, vacations are supposed to be enjoyable and promote a feeling of calm serenity!

1) Organize Your Dialysis: Before you do anything, talk to your doctor and dialysis center staff about arranging treatment at your destination. It's important to do this as soon as possible as it may take many weeks to finalize and confirm, especially if your travel is international. Most centers will have a coordinator or renal social worker that helps patients specifically with travel arrangements. Working with them will help reduce stress by coordinating treatment scheduling and handling medical records transfer. If you are a home dialysis patient (peritoneal dialysis or home hemodialysis) medical supplies will need to be delivered to your destination ahead of your arrival, if in-center you will need to secure dialysis slots in a trusted center at your travel destination and fit their acceptance criteria.

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AAKP newsletters are for informational purposes and share some of the latest news in popular media and within the kidney community. The content included is not necessarily the opinion of the Association.  AAKP has no control and is not libel for article links that have been removed/changed/broken.