Bridget's PKD Community
Bridget is trying to create a community of people with PKD who can share hope and information with each other. You don't need to join the community to use the message board but do for the chat room (it's free). If you have hotmail, you can use your name and password to get in.
PKD Community Community was created because she (teenager with ARPKD) felt a person who has this disease should talk about it. You can e-mail or icq her if you'd like to talk. You do need to join to use the chat room but she's holding chat meetings 3 times a week. Also has a PKD message board and some religious links.
Glenn Foley Wings Foundation Web site of football play Glenn Foley whose mother and an older brother have PKD. This foundation is trying to help raise awareness of PKD and money for PKD research. It tells his mother's story of having PKD and her eventual kidney transplant from her husband. You can also ask his mom Sue questions about PKD and see other's questions.
Cecilia Maida's PKD Public Awareness Page Cecilia Maida is traveling around the country with her dog Max to increase public awareness about PKD. She's already done many local and some national interviews.
The Polycystic Kidney Research Foundation is currently helping her set up a drive-a-thon to help with her expenses if you'd like to help.
Polycystic Kidney Disease, a personal story experience of someone who was diagnosed with PKD and polycystic liver disease in the U.K. and who helped create the Polycystic Kidney Disease Charity there after having trouble finding information in her own country.
EuroPKDFriends A website for those with PKD in Europe. It has many links for PKD, dialysis, ect., message boards and a chat room with times that are probably much more convenient for those not in the U.S.
Iowa PKD Forum To help support those with PKD in Iowa.
PKD Web Group For Teens Started by a teen with PKD in Ohio for teens to talk to each other using e-mail or instant messenger.
PKD.com Website from someone in Belguim who's close to a person with PKD. It has message boards, chat room and links.
Mary Elizabeth's Home Page Home page devoted to PKD and organ donation.
Linda's PLD polycystic liver disease support group Web site for those with severe liver cysts usually with PKD as well. Has message board, a list serve, and links.
PKD Diet Gives information on an alkaline diet for PKD. This is something the person who writes the web page has tried and it does have some science behind it but isn't embraced by the medical community.
Some doctors have prescribed alkalizing agents for PKD since it's shown promise in slowing cysts growth in rats with PKD but it hasn't been proven in people. Since this (alkalizing agents) is much less of a life style change than making a major change in your diet, doctors seem more comfortable with trying this.
If you want to try this diet, make sure you discuss it with your doctor. Most foods that are alkalizing are fruits and veggies which can have too much potassium and other minerals for someone with very low kidney function.