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:
University Distinguished Professor and Kidney Institute Director Emeritus
Department of Biochemistry and Molecular Biology
Department of Biochemistry and Molecular Biology
Department of Internal Medicine-Harry Statland Professor of Nephrology
University of Kansas Medical Center, Kidney Institute
University of Kansas Medical Center, Kidney Institute
Associate Professor
Department of Internal Medicine-Nephrology
University of Kansas Medical Center, Kidney Institute
Chief Scientific Officer
PKD Foundation
PKD Foundation
Assistant Professor
Department of Internal Medicine-Divison of Nephrology & Hypertension
University of Kansas Medical Center, Kidney Institute
Department of Internal Medicine-Divison of Nephrology & Hypertension
University of Kansas Medical Center, Kidney Institute
Professor
Department of Biochemistry and Molecular Biology
University of Kansas Medical Center, Kidney Institute
Department of Biochemistry and Molecular Biology
University of Kansas Medical Center, Kidney Institute
Professor, Director
Department of Internal Medicine- Division of Nephrology & Hypertension
University of Kansas Medical Center, Kidney Institute
I hope to see you on March 9th!
Marlene Stewart
PKD Foundation - Atlanta Chapter Coordinator
