Kidney Action Week: 4 things you need to know about kidney disease

“Kidney disease is a major and growing public health concern,” LaVarne A. Burton, American Kidney Fund President and CEO, said in an interview with Bio.News. “Efforts to raise greater awareness of kidney disease play a key role in helping people understand who is at risk for kidney disease, and providing people the information and tools they need to help prevent kidney disease and manage their kidney health is critically important.”

Ahead of Kidney Action Week®, which kicks off March 3, we spoke with the American Kidney Fund to talk about the top four things patients need to know about kidney disease.

1. 9 in 10 people who have kidney disease do not know it.

There are approximately 35.5 million (about 1 in 7) Americans living with kidney disease today, and about 815,000 Americans living with end-stage renal disease (kidney failure). Of that population, nearly 555,000 Americans are on dialysis, and more than 260,000 Americans are living with a kidney transplant. Health disparities in kidney failure are clear: compared to their white counterparts, Black Americans are 4 times more likely to develop kidney failure, and Americans of Hispanic ethnicity are 2 times more likely.

Kidney disease is growing at an alarming rate. In the last decade for which data is available, there was a nearly 30% increase in the prevalence of kidney failure.

These numbers could be driven in part by the fact that 9 in 10 people with kidney disease are unaware they have it, and 1 in 3 of those individuals have severely reduced kidney function (but are not yet on dialysis).

Paul R. learned just how easy it is to go about your life with kidney disease being none the wiser. “I really didn’t start having any health issues, per se, until I was about 12 years old,” he says. “That’s when I started having GI issues. I could tell something was manifesting inside of me, but [did not know] an answer to what it was. And it wasn’t until my late, mid to late 20s, when I met my now wife who changed my outlook on how I was going about dealing with issues of back pain.”

Paul R. on his experience with kidney disease.

Paul’s story highlights just how important it can be to get a second opinion, as he was initially diagnosed with polycystic kidney disease (PKD). But Paul’s wife pushed for more answers. When he went to Johns Hopkins (and underwent many tests), he learned that he actually had Fabry disease, a rare genetic disorder causing dangerous fat buildup in cells due to a missing enzyme, leading to kidney, heart, and brain issues.

“Being misdiagnosed was frustrating, because had I not gone for a second opinion, I don’t know where I’d be today,” Paul said. “Being diagnosed with Fabry was a huge relief. It meant that I knew what I had, what options were available for treatment, and what potential symptoms I had to look out for.”

2. There are often no early symptoms of kidney disease.

A major reason why kidney disease can fly so effectively under the radar is because, often, early symptoms are mild or non-existent and can be mistaken for something else. It is only when kidney disease progresses and becomes more serious that symptoms arise, contributing to kidney disease being known as a “silent killer.”

However, while early kidney disease has no signs or symptoms, simple blood and urine tests can tell how well your kidneys are working, so patients who are at especially high risk should get tested.

3. Diabetes and high blood pressure account for roughly 3 in 4 new kidney disease cases.

Diabetes, high blood pressure, poor diet, and decreased physical activity all increase the risk of kidney disease. Being physically active, keeping a healthy weight, and getting tested for kidney disease can help protect your kidneys. And even small changes can make a big difference.

That being said, ensuring all patients get tested for kidney disease is important because there is no one face of kidney disease—it can happen to anyone, even a healthy and active air marshal like Vaughn Reynolds.

After attending the American Kidney Fund’s annual gala, The Hope Affair, Vaughn was telling a friend about the event. His friend mistakenly assumed his wife was the one with kidney disease, to which Vaughn informed him that it was actually him.

“You don’t even look like a kidney patient,” Vaughn’s friend said.

“And I said, ‘What does a kidney patient look like?’ You never know. You can’t tell from looking on the outside,” Vaughn explained.

Even Vaughn couldn’t believe his diagnosis. When doctors found blood and protein in his urine, Vaughn didn’t think much about it. “As early as I can remember, they always saw blood in my urine,” said Vaughn.

After years of seeing blood in his urine, and his mother searching for answers with no luck, Vaughn thought it was normal—even putting off a recommended kidney biopsy in 2012. That all changed in 2023 when Vaughn was diagnosed with stage 5 kidney disease, also known as kidney failure.

“I said, ‘Check it twice,'” said Vaughn. The doctor said, “‘We checked it three times. There is no doubt you have all the classic signs and symptoms of end-stage renal disease.’”

Diagnosed with Alport syndrome, a genetic disease caused by problems with three genes that control how certain parts of your body are shaped, Vaughn was put on the transplant waitlist. Shortly thereafter, he received a kidney from another Army veteran who requested that her organ be donated to a fellow veteran.

4. There is no cure for chronic kidney disease.

As the American Kidney Fund explains, early detection saves lives. While kidney disease is highly treatable, it is not curable or reversible.

When caught and treated early, it’s often possible to slow or stop progression and avoid serious complications like heart attack, stroke, kidney failure, and early death.

Healthy eating, physical activity, limiting alcohol, and avoiding tobacco products can also help prevent progression when combined with a targeted treatment to fit each patient’s specific needs and situation.

While the risk of kidney disease can feel overwhelming, the American Kidney Fund has a number of resources to help, including Kidney Health Coaches, informational material, and events—including Kidney Action Week from March 3–7.