Here, There, and Everywhere

I was thinking about the AAKP Annual National Meeting coming up in September. You see, I’ve never been to one. Years ago, when I first started writing about Chronic Kidney Disease a reader asked if I’d be there. I was almost a decade younger then and had lots on my plate: teaching college classes, acting, writing, being an active mother, and getting used to my new diagnose. I had no time to run off to meet a bunch of people with the same disease. I didn’t even know anyone there!

Yep, things have changed for me. I’ve retired from both education and acting as of 2013, my children are out of the house although we still have almost daily contact, and I’m better at dealing with CKD. So I’m going. I thought you might like to know something about this group since it was started by patients for patients.

AAKP is the acronym for the American Association of Kidney Patients. I am flabbergasted that six patients in Brooklyn, New York, started this group in 1969 while they were undergoing dialysis and that today AAKP reaches one million people at all stages of kidney disease. I’m a member as of last week. Did I mention that membership is free? This year’s meeting will be in St. Petersburg, Florida from September 8th to the 10th.

I also shied away because I thought they’d have nothing to offer me since I’m stage 3 and the association was started by dialysis patients. I was wrong. Some of the General Sessions deal with national policy and kidney disease, innovations in kidney disease care, patient centered kidney disease care, and the kidney friendly diet. This is not all of them, just the ones I’m interested in.

The smaller Breakout Sessions that might interest others in the early or moderate stages of CKD are social media, dental health, clinical trials, staying active, veterans’ health, lab values, and vaccinations. But that’s not all: there’s even lunch with the experts on the first two days. The topics range from transplant, caregiver, advocacy, cooking, and support groups to acute kidney injury. I mentioned those areas that interest me, but there’s more, far more.

Before I start to sound like I’m selling you a product, here’s their web site so you can explore this association and national meeting for yourself: https://aakp.org.

Let’s say you don’t want to travel. How else can you partake of the kidney patient world, the part of it that doesn’t deal with going to the nephrologist or renal dietician? Well, have you heard of Renal Support Network at http://www.rsnhope.org/? Lori Hartwell has had kidney disease since she was two years old and wanted to instill hope in those with the disease. Now you understand the URL. There are also podcasts about kidney disease at http://www.rsnhope.org/kidneytalk-podcast/ or you can go through the menu on their home page.

Here’s something you can do to help other kidney patients and maybe, just maybe, see your work in print.

Calling all Storytellers who have kidney disease, Share your Experience!

Enter RSN’s 15th Annual Essay Contest.
This year’s theme is “Describe a positive decision that you have made about your healthcare.”
First Prize: $500, Second Prize: $300, Third Prize: $100
Winning essays will be published on RSNhope.org and in Live&Give newsletter

Lori was especially helpful to me when I was first starting out in CKD awareness advocacy. I think you’ll find something of interest to you on her website, although I’ll bet it won’t be the same something for any two people. What I especially like is the Health Library with articles on varied subjects.

Further afield, The Bhutan Kidney Foundation is doing an Amazonian job of spreading kidney disease awareness. I am constantly reading about their walks and educational meetings, as well as governmental initiatives. I think they may even have a Facebook page. Let me go check. Hi again. I’m back and they do.

Have you heard of Mani Trust? This is an India based group that strives to provide humanitarian help to individuals and their country, including those suffering from kidney disease. We know this is not a Western-part-of-the-world-only problem, but I wonder if we realize just how widespread it is.

Remember I told you about the CKD awareness presentation I offered at a global conference several weeks ago? I found astounding facts from World Life Expectancy at http://www.worldlifeexpectancy.com. One of the most striking facts I included in that presentation is that globally 864,226 people  died of kidney disease last year. That makes kidney disease number 15 in the cause of death hit parade.

In Malaysia, there were 2,768 deaths due to kidney disease, over 2% of the country’s total population. In Albania, there were 443, that’s also close to 2% of the country’s total population. Ghana had 2,469 deaths, which is 1.3%.  Egypt? 15,820, which is almost 3½ %. Here in the United States, there were 59,186 deaths, which is almost 3% of our population. What’s my point?

Kidney disease is a global problem. I don’t know what I can do to help in other countries in other parts of the world, but I do know what I can do to help here… and what you can do to help here. If you’re able to, attend the national meetings and local conferences about kidney disease and spread whatever new information you’ve learned. If you are unable to travel, keep your eye on the Facebook kidney disease pages which often have files and delve into them. Share this information, too. If you don’t travel and you’re not on a computer, register for mailing lists and share information from them, too. Of course, check everything you read with your nephrologist before you share and use the advice yourself.

 

You’ll find a blog roll – a list of kidney care and awareness organizations – on the right side of my blog. Why not explore some of these and see which ones appeal to you? If you like them, you’ll read them. And, hopefully, if you read them, you’ll share the information. According to the latest CDC findings, more than one out of every seven people in the United States has CKD. Let’s try to change those figures. By the way, you can read more about this at https://www.cdc.gov/diabetes/pubs/pdf/kidney_factsheet.pdf.

Until next week,
Keep living your life!

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2 CommentsLeave a comment

  1. This is tremendously valuable information. Thanks, thanks for posting it.

    • You are very welcome, Paul. There’s so much more but I try to stay close to 1,000 words.


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