Donate

AAKP

AAKP Renal Flash
In This Issue
Register for the AAKP National Convention
Many Patients Don't Understand Medical Information
Kindness of Strangers Helps Saves Lives
Inner City & Suburban Dialysis Clinics Perform Equally
dialysis cart
 A Cart Designed for All Dialysis Patients.
Visit www.ipu.com for more information.
Quick Links

 

Find us on Facebook   
Follow us on Twitter

Convention registration brochure

Register for the 38th Annual AAKP Convention

The American Association of Kidney Patients (AAKP) is now accepting registrations for its Annual Convention. The event takes place Aug. 26-28, 2011, at the Little Rock Peabody Hotel in Little Rock, AR.

 

Convention registration packages are $135 for patient family members. AAKP Life Members and Members receive a discount.

New this year - a Public Policy Forum at the William J. Clinton Presidential Center. A panel of national health care policy makers, providers and health care professionals will discuss issues relating to health care disparity. Visit the AAKP website to download a copy of the AAKP Convention Registration brochure. 

 

 May 2011 
masthead
Many Patients Don't Understand Medical Information

health literacyAbout one in six kidney dialysis patients in the United States doesn't understand health information that's important for their well-being, according to a new study appearing in this month's issue of the Clinical Journal of the American Society of Nephrology (CJSAN).

 

Patients with limited health literacy - the ability to obtain, process, and understand health information in order to make appropriate health decisions - may not fully understand written medical information, may not be able to communicate effectively with health care providers, or navigate the difficult health care system.

 

Health literacy is particularly important for kidney patients undergoing dialysis. They must attend treatment sessions several days a week, follow dietary and fluid restrictions, and stick to difficult medication plans, all of which require patients to understand and act on complicated health related information.

 

Click here for more information on Health Literacy.

 

Kindness of Strangers Helps Saves Lives 
tsunami dialysisFor at least 170 dialysis patients in Tagajo, Miyagi, an area of the tsunami ravaged Japan, the kindness of strangers hasn't just meant new clothes and hot meals; it's meant survival itself, in the form of four buses to ferry them to hospitals for treatment.

 

The urology clinic where about 170 dialysis patients were staying or making regular visits was hit by a tsunami over three feet high on March 11, destroying 59 dialysis machines as well as the clinic's two buses. The clinic's manager jumped into action, contacting restaurants, soccer clubs and the local Asist sports club asking to borrow buses. He was able to get four buses and transport the patients to three treatment center in neighboring cities.

 

You can read more on this story by clicking here.

Inner City & Suburban Dialysis Clinics Perform Equally

Research presented at the National Kidney Foundation's Spring Clinical Meedialysistings shows clinics that deliver dialysis to inner-city patients, many of whom live below the poverty level, are performing just as well as other clinics nationwide.

 

The study was conducted by researchers with Davita. Scientists compared metrics associated with quality of care between patients of 63 urban and 1,298 non-urban clinics. All inner-city clinics were located in dense population areas with at least 1 in 5 families living below the poverty level.

 

Researchers looked at whether patients in both groups had received proper vaccinations, if their anemia was under control, and how many had a type of access for dialysis that minimizes the risk of infections. They also noted how efficient dialysis was in removing toxins from patients' bodies, and the percentage of patients with healthy blood levels of parathyroid hormone, calcium, phosphorus, and albumin. They found that clinics serving in urban areas were faring just as well as clinics outside of those areas.

 

Researchers believe one reason inner-city clinics fare just as well as their non-urban counterparts is that all clinic administrators focus on these particular metrics as a way to keep their patients healthy.

AAKP Teams With Emory University to Test for Fabry Disease

fabry brochureAAKP is working with Emory Genetics Laboratory to test individuals for Fabry disease. The partnership, called the Fabry Family Member Testing Project, is a program intended to test individuals with a known family history of Fabry disease.

 

Fabry disease is a rare hereditary disorder caused by a faulty gene in the body. Approximately, 1 in 40,000 men and 1 in 20,000 women in the United States are affected by Fabry disease. Because the early symptoms of Fabry disease are very nonspecific, individuals affected by Fabry disease are often misdiagnosed with a variety of conditions ranging from heat stroke to multiple sclerosis. The longer the disease goes undiagnosed, the more damage it will do to the kidneys, heart and other organs.

 

Individuals wanting to participate in this testing program must be at risk to be affected by Fabry disease based on the Fabry disease pattern of inheritance in their family and know the genetic change or mutation causing Fabry disease in their family.

 

For more information about the Fabry Family Member Testing Project, call the Emory Lysosomal Storage Disease Center at (404) 778-8565 or (800) 200-1524. You can also visit the Fabry Family Member Testing Project Web site at http://www.genetics.emory.edu/LSDC/fabryproj.php.

 

The Fabry Family Member Testing Project is made possible through a generous grant from Genzyme.