While having family and friends to turn to can make a huge difference for people dealing with chronic kidney disease (CKD) or life on dialysis, sometimes it isn’t enough. Talking to others who are going through the same experiences as you can be a much-needed opportunity to vent, share information, get advice and receive and provide support.
Nowadays, support groups can be found in all sorts of places. One great place to connect with others is online. There are many discussion forums and email lists that help bring together people who share a common interest. While there are numerous websites, discussion forums, blogs and email lists, below are a few samples of where to find online support groups.
The discussion forum at DaVita.com is a place where people with chronic kidney disease, those on dialysis (either at home or at a center), as well as family members and friends of those with kidney disease, can talk online. Some topics include: Share Your Experiences, Lifestyle, Education and Caregiver Support. There’s no cost to join or read postings on the DaVita.com discussion forum, although you will need to register to post messages.
To register, click on “Create a User Name now” and follow the directions.
You can visit websites that specialize in information for those with kidney disease, and participate in the discussion forums. Many will also let you join an email list to talk with other renal (kidney) patients. With an email list, when any member sends an email, everyone who is subscribed to that email list receives it. (This can mean getting a lot of email). There are a number of email lists you can join, as well as websites to visit. As there are too many to list them all, below are a few places to get you started.
Yahoo! Health groups has several question-and-answer exchanges for people on dialysis as well as those who want to learn more about kidney disease. Type: dialysis support into the "search" box. You’ll find many groups listed (29 as of May 2007) that are targeted to different segments of the kidney disease community including:
Dialysis_Support started June 15, 1995 and claims to be the “original and authentic, globally-recognized, end stage renal disease (ESRD) email educational and support forum.” This support site was created to help people adjust to kidney failure and live a fulfilling life.
CAPD-CCPD - This site is for people on peritoneal dialysis (PD) to learn from others on PD. (The CAPD stands for continuous ambulatory peritoneal dialysis and CCPD stands for continuous cycling peritoneal dialysis.
Friends and Kidney Support - Learn about kidneys and meet new friends through this “Friends and Kidney Support Club.
Kidney Friends - This group is for those with a family member who has CKD.
Renal Care - This is a support group for patients and caregivers and welcomes all who have an interest in kidney disease.
Google Groups - This is another resource you can use to find other kidney disease and dialysis patients as well as family members. Type “kidney disease” in the search and click “Search Groups” to find a list of related groups.
Topica - This is a searchable website where you can find email discussion lists by topic. To find email lists for CKD, go to the center of the page under “Choose from Thousands of Newsletters and Discussions” type “kidney” in the search box and click on “Search.”
I Hate Dialysis.com - This site is “for patients by patients.” The intro on the home page says, “Do not let the site’s name fool you, we are not about being negative, we just hate dialysis.” This online community desires to be supportive and help its members deal with the struggles of kidney disease.
Kidney Korner - Kidney Korner says, "You've got someone in your corner." It is focused for people who recently found out that they have kidney disease.
Several national, nonprofit organizations have websites devoted to educating and empowering those interested in kidney disease. Some of these organizations have local chapters that are active in their communities. Some of the sites also have discussion forums of their own.
30 East 33rd Street
New York, NY 10016
“The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.”
3505 E. Frontage Rd.
Tampa, FL 33607
“The American Association of Kidney Patients (AAKP) is a national, nonprofit organization founded by kidney patients for kidney patients.”
You can also call the HOPEline at 1-800-579-1970
1311 N. Maryland Avenue
Glendale, CA 91207
“The Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD).”
1250 Broadway, Suite 2001
New York, NY 10001
“The Kidney & Urology Foundation of America, Inc. is a national, not-for-profit organization dedicated to helping people avoid the debilitating effects of kidney and urologic diseases.”
1155 15th Street N.W., Suite 1100
Washington, D.C. 20005
"DPC is a nationwide, nonprofit, patient-led dialysis organization with membership open only to dialysis and pre-dialysis patients and their families. The goal of DPC is to improve the quality of life for all dialysis patients through education and advocacy. (DPC was originally founded with a grant from DaVita, but now is funded by numerous sources.)"
While connecting with people online can be a great benefit, some people prefer face-to-face interactions.
Those on dialysis who receive treatment in a center have regular contact with professional caregivers and other dialysis patients. Renal social workers are available in the centers to provide information on existing support groups. For those not on dialysis or dialyzing at home, it may take a little more effort to find a support group. Here are some tips for getting the in-person support you desire.
Speak to your doctor about any groups or organizations he or she may know of in your area. You might also contact local dialysis centers (even if you are not on dialysis) to find out if the social workers at the centers, know of any local support groups.
If you are unable to find a group, you may consider starting a group in your area where members can meet face-to-face. Some of the national, nonprofit organizations help with setting up local chapter support groups and may even provide some financial support.
You may want to arrange a meeting with a renal social worker in a local dialysis center. Not only can a social worker let you know about groups that are already set up in your area, a social worker can also help you start a new support group. Because social workers have expertise in group dynamics and other factors related to creating a successful support group, talking to a social worker is a great first step.
To find out if starting a support group may be of interest to you, here are questions to ask yourself, plus some guidelines to follow.
Are you ready to be a support group leader?
Organizing and running a support group can be a rich and rewarding experience. However, it can also be tiring and time consuming — particularly for someone dealing with kidney disease. Ask yourself the following questions before you commit to creating a support group:
If you answered, “Yes,” to most of these questions, you may want to start forming your group.
Once you’ve decided to take on this challenge, you’ll want to find others to help. Co-leaders will be able to take your place if you can’t attend a meeting, share the work of organizing and running the meetings and offer general support.
These might be people you’ve met through chat rooms or discussion forums, or other CKD or ESRD patients in your area. Those you’ve chosen to help should be dependable, and share the philosophy and goals you have for your group.
Define your group’s target audience
Decide who your support group aims to help. Will your support group focus on people with early-stage CKD and not on dialysis; on dialysis, and if so, at-home or in-center; waiting for a transplant or who have received a transplant? Will it be for caregivers, family members, friends or just the person with kidney disease?
While you can accept anyone and everyone into your group, it can be helpful to target those you wish to reach, so more group members will have shared experiences.
Select a name
The name of your support group should identify what your group is about. You might brainstorm with co-leaders for this.
Select a meeting time, place and frequency
Meetings can be as often as once a week, or as seldom as every quarter. If you’re not sure how much you can handle, start with fewer meetings and increase the frequency as you get more comfortable (or as needed). Once your group is established, you’ll want to be consistent with the meeting day and time, to allow members to plan ahead to attend.
You’ll also need to decide where your group will meet. A smaller group may meet comfortably in your home or that of a co-leader. If you prefer a public space, talk to local hospitals, dialysis centers, churches, and community centers — many will allow you to use one of their meeting rooms at no charge.
Meetings should last 1 to 2 hours. It’s best to start and end on time. People tend to quit coming if meetings drag on.
Advertise the group and meetings
Design a simple flyer announcing your group and meeting times, and ask permission to distribute them at local nephrologists’ offices, local hospitals, dialysis centers, pharmacies and public bulletin boards. You might even consider running an ad in the local paper or having meetings announced by a local radio station.
Running the meeting
Having a rough outline of the meeting format can help you keep the meeting on track and stay within your allotted time. A 90-minute meeting might be divided up something like this:
You and your co-leaders should be vocal during the discussion, especially if guests are quiet and/or unsure. Encourage participation from all members, and make participants feel welcome and valued.
As time goes on, you’ll want to keep meetings engaging with guest speakers, stimulating meeting topics and other items of interest. By the third or fourth meeting, your support group should be well-established.
Stay in touch with members
Whether it’s a simple email to remind members of the next meeting or a heartfelt response to a question, you’ll want to find a way to connect with group members. As the support group leader, members will look to you for a certain amount of guidance and advice.
You don’t have to feel alone. There are millions of people in the United States who are affected by kidney disease. Reach out online or in-person to find those who share your experience and get the support you need.
The websites and other online services mentioned in this article are provided for informational purposes only. The authors make no representations about the information contained on any these websites or online services and disclaim any liability there for.
This site is for informational purposes only and is not intended to be a substitute for medical advice from a physician.
Please check with a physician if you need a diagnosis and/or for treatments as well as information regarding your specific condition. If you are experiencing urgent medical conditions, call 9-1-1