News and Information
PKD Foundation News and Announcements
PKD Patient Handbook
The newly updated PKD handbook is now available! The revised handbook has undergone extensive reviews and updating by PKD experts. Topics include PKD signs and symptoms, diet and nutrition, kidney failure, transplantation and more.
Download your digital copy today!
Local Events and Meetings
Lisa is a music teacher at Liberty Elementary School in North Ridgeville, Ohio, and the student council organized a fundraiser to raise money for the PKD Foundation, raising nearly $500 to help fight PKD.
Lisa Cormack has three children, and her girls, Jaina (age four) and Chesley (age 1), have ARPKD. Her son, Dougie (age 2), is a carrier of the gene. When Jaina was diagnosed last summer, her blood pressure was more than double what it should be for a child. Her kidneys were larger than a normal adult kidney, her liver had fibrosis on it and her heart was thickened on the left side from high blood pressure.
"We had no idea she even had this disease, let alone could be in such poor health," Lisa said. "Since ARPKD is a recessive disease, my husband and I didn't know we were carriers and could possibly pass such a deadly disease on to our children. We are very lucky to have such healthy children today. We pray every day their kidneys last as long as they can, seeing as the average age for transplants for this disease is 10 years old."
Chapter meetings are another opportunity for you to have your questions and concerns about PKD addressed. We will do our best to provide you with answers or direct you to someone that can assist you. Everyone is welcome!
Although the Northeast Ohio Chapter does not have any meetings planned at this time, we would still love to hear from you! If you have any questions concerning support meetings, please email our Volunteer Chapter Coordinator, Sheila, at firstname.lastname@example.org.
Check back for meeting updates!
Northeast Ohio Walk for PKD
September 19, 2015
Bedford Reservation, Egbert Picnic Area
Registration is now open!
To learn more about the Northeast Ohio walk or to donate, click here.
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Next Webinar Wednesday
What are cilia and why do they matter?
PKD Foundation Chief Scientific Officer, David Baron, Ph.D., will discuss what cilia are and why they matter. He will also take time at the end of his presentation to answer your questions.
Latest National Webinar
Pain and PKD
Chronic pain is a major factor affecting the quality of life of a PKD patient and one that is difficult to manage. Dr. Theodore Steinman has spent years working with PKD patients to help them manage their pain and get back to life. In this webinar, Dr. Steinman covers the latest in PKD pain treatment and how to manage daily pain at the various stages of PKD.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.