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Connecting with Fellow Patients
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Times have changed and so has technology. When I was diagnosed with kidney disease 34 years ago, we merely had telephones, televisions, and radios. Today, we have a new way of communicating via cell phones, text messaging, e-mail, and the Internet. No matter which method of communication you prefer, connecting is a useful tool to help learn about ways to live successfully with kidney disease. Today, we rely on the Internet to learn about kidney disease and have on-line friends from around the world. We share our personal experiences with others throughout the world about chronic kidney disease (CKD). The Renal Support Network has developed a web-based bulletin board called KidneySpace.com that has opened up many doors for connecting people living with kidney disease. It’s easy to join—you simply register at www.kidneyspace.com, create a username and password, and shortly thereafter an e-mail will be sent to you indicating your acceptance to the site. You can start sharing your personal experiences and concerns, and gain insight from fellow members. Kidneyspace is a tool for reaching out to others who are experiencing the same things we are. It allows us to share our deep personal stories and many experiences that come with this disease. Some posts are positive, while some posts are negative; however, they all include our need to convey our thoughts and feelings. We also share about our home lives and how the disease has affected our families. There is a close, family feeling on the site that unites us together. Corresponding about our day-to-day experiences gives us the encouragement, support, and help you would expect from a loved one. Kidneyspace is also a place to meet others for support through our online chat group. The support groups meet twice weekly and a variety of topics are covered. It’s a great place to educate yourself about kidney failure and all the issues that go along with it as well as meet others in real time conversations. Thanks to the improvements in technology, a whole new world has opened up for those of us living with CKD. It is so important for people like us to connect with each other, make new friends, and realize we’re not in this disease process alone. Come join us—‘your CKD family’—at www.kidneyspace.com. We’re online and can’t wait to meet you! About the Author Diana Headlee-Bell went into end-stage renal disease (ESRD) in 1978 at the age of 15 as a probable result of glomerulonephritis due to strep throat. She has received two transplants, her second in 1981, which lasted for 18 years. Her present modality for treatment is in-center nocturnal hemodialysis. Diana is active in her state ESRD Network, serving on the Rehabilitation Committee and the Board of Directors, as well as co-chairing the Patient Advisory Committee. She currently works with RSN as a PEPP speaker, HOPEline operator, and KidneySpace moderator. Last Updated January 2009
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