HDC on Invisible Disabilities

Home Dialysis Central has published a blog post on the “invisible” disabilities that often afflict ESRD patients.  The Medical Education Institute has commissioned a self-adhering window sticker for your car that says “Invisible Disability,” with the idea that you can just point to the sticker rather than trying to explain yourself whenever you are questioned about parking.  Ordering instructions are included in the article.  We didn’t read the post in time to announce it before or during, but this past week was 2019 Invisible Disabilities Week.  Find out more from the Invisible Disabilities Association at https://invisibledisabilities.org/seminarsandevents/invisible-disabilities-week/attachment/2019-invisible-disabilities-week-is-here-oct-13th-19th/.

AAKP/FDA Medical Device Survey

AAKP’s Center for Patient Research & Education (https://aakp.org/center-for-patient-research-and-education/research/) is collaborating with the FDA to foster engagement with patients, caregivers, and patient advocates throughout the development, evaluation and surveillance of medical devices in order to gain insight from patients and caregivers about their experiences living with their diseases as well as experiences with medical devices intended to diagnose and treat their medical conditions.  To further this effort, AAKP asks members to take a brief anonymous survey about the devices you have used.  Find the survey at https://www.surveymonkey.com/r/GGTZNKX.

Home Dialysis Success Story

Gary and Yalonda Moore are both members of the Comagine Health ESRD Alliance Network 16 Patient Advisory Council.  They were recently featured on Anchorage television station KTUU.  Gary is on home dialysis while waiting for a transplant, and frequently recommends home dialysis to other people with ESRD, especially in Alaska, where frequent travel to one of Alaska’s nine clinics can be difficult at times.  He usually stocks more than a month’s worth of dialysis supplies at home, so he’s prepared for emergencies.  Yalonda is a member of the National Forum of ESRD Networks’ Kidney Patient Advisory Council, and in her role there also frequently advocates home dialysis.  Find their TV spot and accompanying story at https://www.ktuu.com/content/news/Anchorage-family-highlights-obstacles-associated-with-kidney-disease-in-Alaska-513320711.html.

HDC re LOL-HD

MEI’s Home Dialysis Central blog has an interesting post on Laugh Out Load Hemodialysis, which Satellite Dialysis has been experimenting with.  Among other things, the post describes the physiological benefits of laughter, including its positive impact on mood, pain, lungs, cardiovascular function, and immune response.  Find the post at https://homedialysis.org/news-and-research/blog/305-laugh-out-loud-hemodialysis-lol-hd-improving-the-dialysis-experience-at-satellite-healthcare/.  While the subject of the post is in-center dialysis, anyone with an internet connection and computer or smartphone who dialyzes at home can call up a million comedies to watch.  See also https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/DPC/DPCLaugh2019.pdf for information on a May 26, 2019 webinar on Pain Relief through Laughter.

NW16 3/3 NKF/PKG Patient Symposium on Lifestyle

NKF and PKG will present a March 3, 2019 Patient & Community Education Symposium in Portland OR on Lifestyle Makes a Difference: Controlling What You Can.  Registration is recommended because space is limited.  For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/NKF.EdSym.PKG0319.pdf.

NW16 3/3 NKF/PKG Patient Symposium on Lifestyle

NKF and PKG will present a March 3, 2019 Patient & Community Education Symposium in Portland OR on Lifestyle Makes a Difference: Controlling What You Can.  Early registration is recommended because space is limited.  For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/NKF.EdSym.PKG0319.pdf.

NW16 3/3 NKF/PKG Patient Symposium on Lifestyle

NKF and PKG will present a March 3, 2019 Patient & Community Education Symposium in Portland OR on Lifestyle Makes a Difference: Controlling What You Can.  Early registration is recommended because space is limited.  For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/NKF.EdSym.PKG0319.pdf.