From Enid News, OK, By James Neal
Patients diagnosed with kidney disease are faced with new challenges in their lives, and many see the diagnosis as the end of life as they know it. A new support group met Wednesday in hopes of dispelling those fears, and giving patients the education and support they need.
The Polycystic Kidney Disease Support Group had its inaugural meeting in a basement classroom at St. Mary's Regional Medical Center, with almost 40 new members in attendance. They gathered to gain education on their disease and to support each other.
Dr. Rashmi Vijayvargiya, attending nephrologist and medical director of the dialysis unit at St. Mary's, said the purpose of the group is to provide kidney disease patients with support, education on disease prevention and treatment, and to "improve the quality of care for patients with chronic kidney disease."
Vijayvargiya said mutual support is essential for kidney disease patients.
"They feel their life is falling apart," Vijayvargiya said, "but when they see other patients who have been there, they see they can continue their life and it gives them faith and hope to continue their life.
"They feel this is the end of life, and their feeling is, 'Am I going to live?' I explain 'This is just a phase of life, we're going to get through this and we're going to have a good quality of life.'"
Vijayvargiya said the support group is not associated with any particular hospital, and is open to any kidney disease patient in the community.
In addition to mutual support, Vijayvargiya told the assembled patients she hoped the group would facilitate education on their disease and its treatment.
"I believe knowledge is power," Vijayvargiya said. "To educate patients is the highest form of care we can give. The more we educate patients the more they will be able to take care of themselves."
Vijayvargiya told the group members early detection and intervention is essential to improving outcomes in treating kidney disease.
She said patients can take steps like quitting smoking, exercising and managing their diets, and control kidney disease risk factors like obesity, high cholesterol and high blood pressure.
Melissa Thomas, who worked with Vijayvargiya to found the support group, said she hopes education and support will help fellow patients to take control of their care.
"I wanted there to be some education to it," Thomas said in an earlier News & Eagle interview. "Even through we cannot control the progression of the disease there are things we can do to help control it. We want the support group to be some education on how we can help ourselves, what we should and should not be doing."
Thomas was diagnosed six years ago with PKD and currently is on a transplant list for a new kidney.
She stressed to her fellow patients that kidney disease, even to the point of being placed on the transplant list, does not have to stop your daily activities. She still works full-time and volunteers with Habitat for Humanity.
Major Rowe rose to speak to the group, and said it's not uncommon to be scared when first diagnosed with kidney disease — especially without a support group.
"I had nothing to start with," Rowe said, "so you're scared every time you turn around."
Rowe underwent dialysis care for three years, and received a kidney transplant last year. He said the key to success in that process is to keep looking to the future, and have a positive attitude.
"You should enter this with looking forward," Rowe said. "Don't put yourself down or others down, and be congenial with those helping with your care."
Barbara Cink, who manages her dialysis with an in-home machine, said her diagnosis came as a shock.
"I was in a very dark place," Cink said. "If it had not been for my husband and family at home it would have been really terrible."
"I know it sounds scary," Cink said. But, she added, patients can overcome that fear "with the trust you have in your physician, with your ability to learn what's best for you, and by really taking your training seriously."
Dallas Winter sought to encourage his fellow patients, especially those early in the process. Winter takes an all-night dialysis treatment each night in his home. And, at age 90, he still enjoys fishing and looks forward to resuming bowling.
"It's no big deal," Winter told his fellow patients of dialysis. "You can still handle it. It's going to be fine."
For more information on the support group call Vijayvargiya at (580) 233-4444. The group will meet from 5:30-7 p.m. the third Friday of every month in basement classroom C at St. Mary's Regional Medical Center.
PKD Research
From EventBrite.com
10th Annual Symposium on Polycystic Kidney Disease
This symposium is organized by the Harvard Center for Polycystic Kidney Disease Research (Director Dr. Jing Zhou). We will update you with the most recent advances in the cilia-PKD field and progresses made by members of the PKD Center at several Harvard Institutions in the past year and other distinguished investigators of the field.
All undergraduate, graduate students, medical students, residents, clinical and research fellows, physicians and basic science faculty members who are interested in kidney disease, cilia or epithelial biology would benefit from attending this conference. See more information at the Center website: http://pkdcenter.bwh.harvard.edu.
DATE AND TIME
Mon, May 8, 2017
8:00 AM – 5:00 PM EDT
Add to Calendar
All undergraduate, graduate students, medical students, residents, clinical and research fellows, physicians and basic science faculty members who are interested in kidney disease, cilia or epithelial biology would benefit from attending this conference. See more information at the Center website: http://pkdcenter.bwh.harvard.edu.
DATE AND TIME
Mon, May 8, 2017
8:00 AM – 5:00 PM EDT
Add to Calendar
LOCATION
The Joseph B. Martin Conference Center at Harvard Medical School
Boston, MA | The Joseph B. Martin Conference Center at Harvard Medical School (Bray Room)
77 Avenue Louis Pasteur
Boston, Massachusetts 02115
View Map
The Joseph B. Martin Conference Center at Harvard Medical School
Boston, MA | The Joseph B. Martin Conference Center at Harvard Medical School (Bray Room)
77 Avenue Louis Pasteur
Boston, Massachusetts 02115
View Map
From MedGadget
Summary
Orbis Research Present’s Polycystic kidney disease (PKD)-Epidemiology Forecast To 2023 And has been prepared based on an in-depth market analysis with inputs from industry experts.
Description
“Polycystic kidney disease (PKD) – Epidemiology Forecast To 2023” provides an overview of the epidemiology trends of Polycystic kidney disease (PKD) in seven major markets (US, France, Germany, Italy, Spain, UK and Japan). It includes 10 years epidemiology historical and forecasted data of Polycystic kidney disease (PKD) prevalent or incident cases segmented by age, sex and subpopulations. The Report also discusses the prevailing risk factors, disease burden with special emphasis on the unmet medical need associated with the Polycystic kidney disease (PKD). The report is built using data and information sourced from proprietary databases, primary and secondary research and in-house Forecast model analysis by team of industry experts.
Request a sample of this report @ http://www.orbisresearch.com/contacts/request-sample/220950
Scope of the Report
The Report includes the prevalent population and how will it change over the next eight years.
Prevalent or incident cases segmented by age and sex.
Coverage of key Polycystic kidney disease (PKD) subpopulations and its prevalent or incident cases
The key differences in epidemiology patterns across the seven market segments
Purchase a copy of this report @ http://www.orbisresearch.com/contact/purchase/220950 .
Pkd mutations and evaluation of same (U.S. Patent Number 20100047785 A1)
The present invention relates to methods of detecting novel mutations in a PKD1 and/or PKD2 gene that have been determined to be associated with autosomal dominant polycystic kidney disease (ADPKD) in order to detect or predict the occurrence of ADPKD in an individual. For more information please contact Johns Hopkins University's Technology Ventures office.
Orbis Research Present’s Polycystic kidney disease (PKD)-Epidemiology Forecast To 2023 And has been prepared based on an in-depth market analysis with inputs from industry experts.
Description
“Polycystic kidney disease (PKD) – Epidemiology Forecast To 2023” provides an overview of the epidemiology trends of Polycystic kidney disease (PKD) in seven major markets (US, France, Germany, Italy, Spain, UK and Japan). It includes 10 years epidemiology historical and forecasted data of Polycystic kidney disease (PKD) prevalent or incident cases segmented by age, sex and subpopulations. The Report also discusses the prevailing risk factors, disease burden with special emphasis on the unmet medical need associated with the Polycystic kidney disease (PKD). The report is built using data and information sourced from proprietary databases, primary and secondary research and in-house Forecast model analysis by team of industry experts.
Request a sample of this report @ http://www.orbisresearch.com/contacts/request-sample/220950
Scope of the Report
The Report includes the prevalent population and how will it change over the next eight years.
Prevalent or incident cases segmented by age and sex.
Coverage of key Polycystic kidney disease (PKD) subpopulations and its prevalent or incident cases
The key differences in epidemiology patterns across the seven market segments
Purchase a copy of this report @ http://www.orbisresearch.com/contact/purchase/220950 .
From NIH, National Institutes of Health
The present invention relates to methods of detecting novel mutations in a PKD1 and/or PKD2 gene that have been determined to be associated with autosomal dominant polycystic kidney disease (ADPKD) in order to detect or predict the occurrence of ADPKD in an individual. For more information please contact Johns Hopkins University's Technology Ventures office.
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