March is National Kidney Cancer Awareness Month
Written by Cheri Woodsmall
In 2018, Jeanine Ramirez received the surprising news that she had kidney disease. Despite having no symptoms or knowledge of a low estimated glomerular filtration rate (eGFR), a biopsy confirmed the diagnosis. As a single mother, Jeanine struggled with how to manage this new reality while balancing work and raising her daughter.
In 2021, Jeanine’s kidney function declined to a point where dialysis was no longer effective, and she was given only six months to live. It was then that she learned that the medication she had taken for ten years, Topamax, in combination with NSAIDs like ibuprofen, could cause kidney damage.
Desperate to slow the progression of her disease, Jeanine stopped the medication, changed her diet, and registered with a transplant center. Despite reaching out to relatives and sharing her story on social media, she was unable to find a living donor within the six months she had left.
That was until a coworker and friend, Jane, stepped in. After learning of Jeanine’s situation, Jane tried to donate but was unable due to a preexisting condition. Undeterred, she sent a company-wide email asking for help and within 30 minutes, received a response from Jimmie Deibert, a coworker in Oklahoma, offering to donate his kidney. Despite initial concerns, the transplant was a 99.9% match and was a success.
Three months after the surgery, Jeanine is grateful but still struggles with anxiety. She credits therapy and online support groups for helping her cope and encourages others in similar situations to seek out support. She says, “You’ll be amazed how many other people have gone through this, and they’ll tell you how they’re coping.”
Kidney disease is a growing public health concern that affects millions of individuals in the United States and around the world. The National Kidney Foundation (NKF) is a patient advocacy organization dedicated to addressing the full spectrum of kidney disease and providing support to those affected by the condition.
37 million Americans have kidney disease and many crash into kidney failure before they even know of the diagnosis. 100,000 people are on the transplant wait list; the average wait time for a kidney transplant is 5 years; 13 people die each day awaiting a kidney transplant, and over 6,000 potentially transplantable kidneys are discarded annually. But despite the desperate need for progress, innovation in the detection, prevention and treatment of kidney disease has lagged far behind that of other diseases for decades.
The National Kidney Foundation is working to increase the awareness, recognition and management of kidney disease, while also supporting innovation in kidney care, working to advocate for policies at the federal and local level for patients and to increase kidneys available for transplant.
Alexandra Garrick, of the National Kidney Foundation serving Western MO, Kansas, & Oklahoma, says that the organization is a trusted resource for patients, care partners, and healthcare providers. “The NKF is here to help, and you are not alone. We have educational resources and programs that help support patients, care partners, and the provider community treating and working with patients,” says Garrick.
One of the key services offered by the NKF is the PEERs program. This program connects patients with trained mentors who have lived experience with kidney disease and provides a supportive network for those managing a chronic illness. “Peer mentoring is a critical component of our support services,” says Garrick. “Speaking with someone who ‘has been there’ helps patients cope with managing a chronic illness.”
The NKF is also committed to advancing health equity in kidney disease diagnosis, management, and care. “Our vision is that we are a trusted resource, connector, convener, and partner working with communities to address inequities through programs and partnerships that remove structural and systemic barriers to kidney health,” says Garrick.
The NKF has several initiatives advancing health equity, including hosting Ending Disparities in Kidney Disease Summits, which was hosted in Missouri this past June in partnership with the Missouri Kidney Program and the Missouri Department of Health and Senior Services. The NKF is also working with local safety net health systems on initiatives that help identify people living with undiagnosed kidney disease. The NKF works with community based organizations to collaborate on strategies to increase kidney disease awareness and testing, especially in communities that are disproportionately burdened by kidney disease.
Innovations in kidney disease treatment are also a key focus of the NKF. The organization is investing in companies to accelerate the fight against kidney disease and provides patients with access to the latest treatments and technologies. The NKF Innovation Fund has been created to accelerate and catalyze additional funding for innovation in kidney health by investing in primarily early-to-mid-stage companies developing therapies to eliminate preventable kidney disease, eliminate the transplant waitlist, and ensure that dialysis patients have full, productive lives.
In honor of National Kidney Month, the NKF is hosting several events and programs to raise awareness about kidney disease and support those affected by the condition. “We are encouraging the public to take a minute for their kidneys by taking a short quiz to determine their kidney disease risk,” says Garrick. “We are also hosting community kidney health education events and a Kidney Health Awareness Day at the Kansas Statehouse.”
The National Kidney Foundation is a critical resource for individuals affected by kidney disease and kidney cancer. With a wide range of programs and services designed to support patients, care partners, and healthcare providers, the NKF is dedicated to ensuring that patients have equitable access to care, educational programs and resources they need to live healthy and productive lives.
To learn more about the organization and its programs, visit kidneyksmo.org.
Great Chefs of the Midwest
Sun, 03/05/2023 – 4:00pm
Kidney Social Summit
Sun, 03/26/2023 – 2:30pm
Culpepper Exum Scholarship
Mon, 05/08/2023 – 11:00pm
Culpepper Exum Scholarship Flyer
Magic of Giving – Great Plates
Thu, 05/11/2023 – 5:30pm
Kansas City Kidney Walk
Sun, 10/08/2023 – 9:00am
Kansas City, MO
Wichita Kidney Walk
Sun, 10/08/2023 – 9:00am