The Internet World of PKD (Polycystic Kidney Disease)

Today's blog is catch up in the world of Polycystic Kidney Disease.  My last blog was way back on Feb. 14th.  Work and life swept me away but now I'm heading back in to shore.

MARCH IS STILL NATIONAL KIDNEY MONTH!

We are coming into the end of National Kidney Month.  With my little swim out to sea, I really didn't get to participate much.  But its better late than never as they say.  I've read so much great information.  Not only from our own PKD Foundation and it's chapters but also from many other organizations and foundations that posted inspiring, helpful and healthful information.   In this day and age of the internet it is truly amazing the information afforded to us. I thought I'd mention some great sites we as kidney disease patients can always go to and get answers,  address our fears, show us how to be as healthy as possible and always give us hope!

PKD Foundation                                                     The American Association of Kidney Patients            

National Kidney Foundation                                   National Kidney Center 

American Kidney Fund                                           Kids Health (have a tab for kids only!)

National Kidney Disease Education Program        American Society of Nephrology

Davita Dialysis Centers                                          Fresenius Dialysis Centers

The Nephron Information Center                            Wikepedia-Chronic Kidney Disease

National Kidney and Urologic Diseases Information Clearing House (NKUDIC)

I'd like to mention here to remember there's more to National Kidney Month than just reading information about taking care of yourself.  Please take time to tell your friends and family to learn about how to take care of their own kidneys so they never have to experience kidney disease.

SO MUCH MORE ON THE NET FROM THE PKD FOUNDATION!

The above sites are all professional websites but there are so many blogs and FB pages about PKD that I've been discovering, following and reading lately, I just had to include them in today's post.  We may be the "great unknown disease" but lord do we have a great community.  Taking the time to read some of these will make you laugh and cry.  It will make you feel so close to people you've never even met.  It is truly so wonderful to feel that you're not alone.

Here are just a few.  Do you own searches and please make a comment and let us know the ones we've missed!

BLOGS                                                                  FACEBOOK PAGES

PKD Foundation Blogs (a bunch)                         PKD (Polycystic Kidney Disease) "Cystahood"

Kidney and Eyes                                                    PKD Foundation      (open)                                      

Surviving PKD                                                       The Fight to Stop PKD  (open)

PKD Blog-Life with PKD                                        Polycystic Help and Advice  (closed group)

Living with PKD                                                      Polycystic Kidney Disease (closed group)

New to PKD                                                           Polycystic Awareness Group (closed Group)

Hope you all find a family in these blogs and pages.  We have such an amazing community and we say PSHAW to not finding love, family and most of all a cure!

Marlene Stewart
Coordinator
PKD Foundation - Atlanta Chapter

WHAT'S NEW WITH PKD?

Hello Atlanta Chapter Members!

I remember when I first learned that I had PKD and asked the doctor what that meant.  All he said was "You have cysts on your kidneys and just have to live with it!" I really didn't think about it again for almost 10 years having no idea what PKD was and how my future would be affected.  It wasn't until moving to Atlanta and being told by a doctor in a routine visit the reality of the disease.  She suggested I see a nephrologist immediately.  I remember thinking how did this happen? How does one not understand the nature of their illness? It occurred to me that not only was my doctor uninformed but also the Internet was still in it's early stages and getting information and education about the disease wasn't so easy. 

As I did begin to educate myself, the sense of empowerment was overwhelming.  There was no way to stop this disease. However, the least I could do was face it with facts, explore research being done and learn how to keep myself healthy as long as possible. I wasn't aware of the PKD Foundation's Chapter in Atlanta until someone at the transplant center told me about it. At that time I was almost at end stage renal failure. Oh but what a joy! Julia Roberts was fantastic with the educational meetings and meeting people who had many of the same feelings and concerns was emotionally gratifying. The realization of how important it was to understand everything about this disease and what was going on in the PKD world hit me like a rock.  

This disease is very individual as far as symptoms and progression. There are things you can do and can't do. However, one of the things you can do is educate yourself!  Had I educated myself earlier, my despair would have been much less. 

This is why I once again would like to bring attention to a wonderful educational opportunity for PKD patients to learn all of the news and great things happening in the world of PKD.  On March 9, 2013 there will be an all day live broadcast from the Kidney Institute at the University of Kansas Medical Center!  

PKD experts will provide the latest information in PKD research, clinical trials, our Accelerating Treatments to Patients initiative and more. There will also be opportunities to submit questions during the event.  

I will host the Atlanta Chapter's broadcast at my home for this wonderful day of education and hope! If you would like to come to my house for this event, you can email me at atlantachapter@pkdcure.org. 

Below are the experts participating and their topics:

Dr. Jared Grantham, Opening Remarks & Clinical Trials

University Distinguished Professor and Kidney Institute Director Emeritus
Department of Biochemistry and Molecular Biology

Department of Internal Medicine-Harry Statland Professor of Nephrology
University of Kansas Medical Center, Kidney Institute 

Dr. Darren Wallace,  PKD Tissue Donation
Associate Professor
Department of Internal Medicine-Nephrology
University of Kansas Medical Center, Kidney Institute 

Dr. Jill Pannetta, CTAP & Drug Repurposing

Chief Scientific Officer
PKD Foundation 

Dr. Connie Wang, Clinical Trials

Assistant Professor
Department of Internal Medicine-Divison of Nephrology & Hypertension
University of Kansas Medical Center, Kidney Institute 

Dr. James Calvet, PKD Research

Professor
Department of Biochemistry and Molecular Biology
University of Kansas Medical Center, Kidney Institute 

Dr. Alan Yu, Closing Remarks
Professor, Director
Department of Internal Medicine- Division of Nephrology & Hypertension
University of Kansas Medical Center, Kidney Institute 

For a more information about this event, please go to:   www.pkdcure.org/whats-new-with-pkd. 

I hope to see you on March 9th! 

Marlene Stewart

PKD Foundation - Atlanta Chapter Coordinator