Chronic kidney disease (CKD) runs in families. Close relatives of patients with kidney failure are more likely to develop CKD than people without a family history of kidney failure. And unfortunately, in most cases, relatives are unaware of their risk. As a kidney patient, you can play an important role in talking to your loved ones about their increased risk for CKD and the steps they can take to protect their kidneys. You don’t need to be a health professional to do this. As a matter of fact, you are uniquely qualified because you are informed about kidney disease and can speak from the heart about the importance of doing everything possible to keep kidneys healthy. It is especially important to talk to family members who have diabetes and/or high blood pressure because these are the leading risk factors for CKD. These conditions also are more common among families with a history of kidney disease.

Steps you can take include:

1) Talking to your family members about their increased risk for CKD.

2) Encouraging them to:

• get tested for kidney disease (and talk to their healthcare provider about how often they should get tested).

• take steps to prevent high blood pressure and diabetes or manage high blood pressure and diabetes if they already have the condition(s).

The tips below will give you some ideas about how to start the conversation and what to say. Feel free to use the tips that work best for you and your family. More information is available in the For More Help section of this article, which offers free materials that you can use to help you educate others.

Starting the Conversation

Talking to loved ones about personal health issues can sometimes be uncomfortable. Here are some ideas for how to start:

• Ask permission to have the conversation, and choose the right time and setting. A quiet, private place that is free from distractions is best.

• If a family member is not comfortable talking about their health, don’t force a discussion. Share your feelings of concern. Let them know that you’ll be ready to talk whenever they are.

• Acknowledge that we may not always want to know if we have a health problem. Be supportive and listen. Emphasize that the final decision to talk to the doctor is theirs.

“Knowing your family history can save your life. It’s important to take advantage of every opportunity to discuss these important medical issues with your loved ones.”  U.S. Surgeon General Richard H. Carmona, M.D., M.P.H.

Important Points to Cover

Here are some things you may want to say when talking to loved ones:

• As you may know, I have kidney disease. Because kidney disease tends to run in families, you may be more likely to develop it. Do you know if you’ve been tested for kidney disease?

• Don’t wait for symptoms. Early kidney disease has no symptoms. That is why it is so important to get tested for kidney disease.

• Testing is the only way to know if you have kidney disease. So please talk to your doctor or healthcare provider about getting a blood and urine test that can detect kidney problems. (You may offer to go with them to the appointment.)

• If you have kidney disease, there are medications you can take to help keep your kidneys healthy. And there are other things you can do to help delay or prevent kidney failure. This is why testing is so important.

For More Help

Free materials are available through the National Kidney Disease Education Program (NKDEP) that can help you be a champion for kidney health. NKDEP, an initiative of National Institutes of Health (U.S. Government), aims to raise awareness about the seriousness of kidney disease, the importance of testing those at high risk, and the availability of treatment to slow or prevent kidney failure. Family Reunion Health Guide, for example, provides ideas on different ways to talk about risk factors for kidney disease at reunions and other family gatherings. It also includes fact sheets about kidney disease, diabetes and high blood pressure that can be copied and used as handouts.

Materials from NKDEP are free of charge and many can be ordered in large quantities—up to 50 copies—at no cost. To order the guide or to review other free materials available from NKDEP, go to the Resources section at www.nkdep.nih.gov.

Dr. Andrew Narva, a nephrologist, is the Director of the National Kidney Disease Education Program, an initiative of the National Institutes of Health. Prior to coming to NKDEP, Dr. Narva established and led the Indian HealthService (IHS) Kidney Disease Program. IHS serves communities with the highest rates of treated kidney failure in the world.

References:

I Jurkovitz C, Franch H, Shoham D, Bellenger J, McClellan W. Family members of patients treated for ESRD have high rates of undetected kidney disease. American Journal of Kidney Diseases 2002; 40(6):1173-1178.

II Freedman B, Volkova N, Satko S, Krisher J, Jurkovitz C, Soucie M, McClellan W. Population-based screening for family history of end-stage renal disease among incident dialysis patients. American Journal of Nephrology 2005; 25:529-535.

This article originally appeared in the October/November 2006 issue of Kidney Beginnings: The Magazine.

Back