Ask the Health Leaders: Chronic Kidney Disease Myths and Misconceptions

In case you missed it, check out Parts 1 and 2 of this series!

Chronic kidney disease is a common health condition. In fact, 1 in 7 adults in the United States – totaling 37 million people – live with CKD. Despite the large amount of people impacted, there are still many misconceptions and misunderstandings about chronic kidney disease.¹

Because CKD is such a complex condition, each person impacted by CKD has unique experiences. We asked our Chronic-Kidney-Disease.net Health Leader team to share their personal experiences with us in our Ask the Health Leaders article series to highlight the diverse experiences for National Kidney Month this March. Read on to see what they had to say about their experiences dealing with chronic kidney disease misconceptions.

What misconceptions about CKD have you encountered?

Danyea Bailey: "I have encountered so many misconceptions about CKD. Three major misconceptions I have had to explain to people is the fact that CKD is solely genetic, due to age only, and that the only treatment is dialysis. I was diagnosed when I was 15 years old, and I found that no matter how I explained it, it was truly a big conversation to have with someone my age. I didn't expect my friends to truly understand these myths and misconceptions because I was also constantly learning and coming to grips with my health."

Education is key

"As I matured and so did the audience that asked me questions about my health, I was able to have these conversations at a better emotional intelligence and general knowledge through educating myself. I knew CKD wasn't genetic for me, considering no one in my family had the same condition. There was no way CKD was exclusive to the elderly population if I was diagnosed at 15. And at that time I wasn't close to needing dialysis. Educating myself so I was prepared to address these misconceptions not only helped my knowledge but also allowed me to educate others."

CKD symptoms often go undetected

Gabrielle Davis: "Many people think you can feel CKD symptoms, especially in the early stages, but that's just a myth. When I was diagnosed with CKD linked to lupus in 2010 (lupus nephritis), I had no clue I had it. There were no clear signs, except for foamy urine and swelling. I thought these symptoms were just part of my lupus, not an indication of kidney issues. This misunderstanding is what I tackle as a CKD advocate."

Advocacy work to educate the CKD community

"My advocacy work focuses on educating the CKD community, especially those with lupus. I share my story to debunk the myth that you can always feel CKD. Through awareness, I emphasize the importance of regular doctor visits and lab tests. My goal is to help others understand that CKD can be subtle and that staying on top of health check-ups is crucial. By spreading this knowledge, I hope to empower people to catch CKD early, making it easier to manage and treat.

"In turn, I was able to better manage my diet and stay off certain diet-related medications for a longer period."

The importance of diet

Holly Wakelin: "In my experience, the biggest CKD misconception I have encountered is that diet doesn't impact your kidney health. If anything, I think understanding diet should be one of the top priorities throughout your kidney journey.

"As people going through kidney disease would know, diet can become super confusing and feel extremely difficult to manage at times. I found by understanding the nutrients I was eating each day, I was able to grasp what was causing high readings in my blood results.

"Figuring out your blood test results can be a big relief when you're going through CKD since you can then understand what all the doctors are talking to you about."

Drinking water with CKD

Diane Talbert: "The biggest misconception that people keep saying to me is that I should have drank more water. I did drink lots of water in my younger days, but as I got older I got hooked on sodas.

"I address these myths by providing the truth. I believe that the amount of water I drink depends on my lifestyle. I have to find the right balance. I did speak to my nephrologist, who said that 32 ounces a day is plenty for me. We are all different, so speak to your healthcare professional before making any lifestyle changes."

Comorbidities and treatments for CKD

Jokiva Bellard: "That your sugar levels can’t be associated with CKD, when there were plenty of times when my doctor and emergency room people actually asked me if I have diabetes. I was asked this plenty of times, and I always told them no, I have never been diagnosed with diabetes. CKD can be very much misdiagnosed as a UTI at first, but stand your ground because they will constantly send you home, and you will get sicker. Chemotherapy does not only treat cancer, it treats everything autoimmune as well. Just because I have CKD does not mean I have cancer as well. That is a misconception, as I have lupus."

The role of genetics

Sabad Khaire: "I was 17 years old. I was telling people about my condition and all the crazy things leading up to it. I was shocked by their response. The first time I was telling someone about my condition, the words I heard were, 'Is it kidney failure? You drink too much alcohol.' I didn't know what to do at the moment. Of course, I was offended – I was only 17 and didn't know how to react, but I knew that was a misconception.

"I shouldn't have been angered by someone who didn't understand. I told them no, but I do have a chronic illness. I was born with it, and we might know the official diagnosis. Still, CKD is something I have had since birth, and my identical sister and I both have it. I had to say it with conviction and in a calm tone to get across that CKD is not something I did to myself."