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NBA legend Alonzo Mourning is raising awareness of genetic kidney disease after rebounding from a kidney transplant that saved his life. Image Provided by Vertex
  • NBA Hall-of-Famer Alonzo Mourning is sharing his journey with kidney disease.
  • After undergoing a kidney transplant in 2003, the legendary basketball player made a comeback to the NBA in 2004.
  • Mourning is leading the Power Forward campaign to spread awareness about genetic-mediated kidney disease.

Legendary NBA Hall-of-Famer Alonzo Mourning was a key player for team USA in the 2000 Summer Olympics in Sydney, Australia. He helped the team win gold.

However, during the Olympic games, he started experiencing swelling throughout his body and a lack of energy.

“I had to travel back and forth [between Sydney and home] because I promised my wife at the time that I’d be back for the birth of my daughter, and [while flying] I noticed that I had some nephritis — some swelling in my legs,” Mourning told Healthline.

The Olympic team doctor initially believed that sitting on the airplane for extended hours caused the swelling, and Mourning pushed through playing.

However, after the Olympics, a routine physical exam detected abnormalities in his kidneys that led to a diagnosis of a rare, protein-spilling kidney disease called focal segmental glomerulosclerosis (FSGS). The condition causes serious scarring that leads to permanent kidney damage and kidney failure.

“It’s amazing what the body can do when you train it to ignore things as professional athletes to still get back out there and play because if I would have known what was going on in my body at the time, I probably wouldn’t have played,” said Mourning.

Mourning learned that his condition was caused by the APOL1 gene and that people who have two copies of the gene with certain variants may have a higher risk of developing APOL1-mediated kidney disease (AMKD). FSGS is one clinical presentation of AMKD.

While there are risk variants that drive the disease, Dr. Susanne Nicholas, member of the Steering Committee, American Society of Nephrology Kidney Health Initiative APOL1 Project, said having the two risk variants does not mean a person will develop AMKD.

“You will need another activating factor, which is currently not fully known but may include inflammation or some other environmental factor,” she told Healthline.

She added that AMKD primarily affects people of African ancestry. Moreover, compared to white Americans, Black or African Americans are more than 3 times as likely, and Hispanics or Latinos are 1.3 times more likely, to have kidney failure.

Nicholas recommended asking your doctor to get screened for the APOL1 variant if you suspect you might be a carrier due to being of African ancestry, especially West Africa, Afro-Caribbean ancestry, having AMKD diagnosis in a family member, or having a family history of progressive kidney disease.

“Early detection allows the individual at risk for kidney disease progression to follow guidelines that reduce the risk for kidney disease progression, under the direction of their physician,” she said.

Dr. Maria DeVita, chief of nephrology at Lenox Hill Hospital, noted that “it is now relatively easy to send saliva samples to one of two specialty labs for the genetic testing.”

Once Mourning was diagnosed with kidney disease, he underwent genetic testing and learned he carried APOL1.

“The only thing we can do is to be an active participant and get tested and…if we have it, then we can process an understanding…and consult with our doctor and figure out how we can make the right decisions for our health long-term.”

Mourning worked with doctors to find the best way to manage his condition. At the time and still today, there is no FDA-approved therapy for AMKD.

“Treatment focuses on optimizing blood pressure and reducing proteinuria [high levels of protein in urine] with medications,” said DeVita.

At 6-10 and 240 pounds, Mourning was a unique patient when first diagnosed.

“I was somewhat of a test rat for my doctors because they had never dealt with anybody my size and treated me the way they treated me,” he said.

He missed the entire 2002-2003 season with the Miami Heat as he underwent a kidney transplant in 2003.

Although genetics was a contributor to his disease, it also helped save his life.

“The beauty of it is that I had a living related donor; my second cousin (my grandmother’s brother’s son) is the one who donated his kidney to basically safe my life,” said Mourning.

As far as he knows, he’s the first person in his family to have chronic kidney disease. He hopes sharing his medical history with his family will help keep them healthy.

“Family history is very important, so everyone should ask questions amongst their relatives if it runs in the family tree,” said DeVita.

For Mourning, becoming educated about his condition helped ease his fear. He asked doctors to explain what they knew so he was aware.

“[It’s] no different than when you have a test to take, and you walk into the classroom, and you know you have a test to take, and you didn’t study. You’re scared, you’re unsure, you know you’re going to fail, but if you study for the test, you feel so prepared and confident going into that test,” said Mourning.

Once he educated himself, he felt more confident in facing kidney disease and prepared to move on with his life, which he did in full force. In 2004, he was back playing in the NBA, and in 2006, he led the Miami Heat to a World Championship.

“And then I started thinking about the other 37 million Americans…statistically speaking, who deal with chronic kidney disease,” said Mourning.

Over time, Mourning felt empowered to help others facing kidney disease. In addition to his role as vice president of player programs and development for the Miami Heat and founder of The Mourning Family Foundation, he uses his spare time to advocate for kidney health.

For his latest endeavor, he teamed up with Vertex and its Power Forward campaign to raise awareness about AMKD.

“Being on this platform, [I’m] encouraging millions of people out there to be active participants in their own health; none of us can sit back and wait for somebody to do it for us. We all have to take that first step,” he said.

By speaking out, he hopes that others will learn about their family medical history, seek out genetic testing if appropriate, become educated about kidney disease, and regularly visit a doctor.

“You just can’t wave a magic wand and expect things to come to you. You have to be an active participant and consult [doctors] to figure out what’s going on with your body, especially if you have fatigue or lethargy or swelling of the legs, things like that I was dealing with,” Mourning said.

For those who are currently facing kidney disease, he said to dig deep physically and mentally.

“If you give up mentally and don’t think that you can help yourself, then I’m walking proof [that that’s not true] because you just have to make all the necessary adjustments that you need to make whether it’d be dietary, exercise, drinking enough water, cutting out salty foods — there’s a lot of different things that you can do to make adjustments as you go through whatever medical regimen your doctors put you through,” said Mourning.

December 19, 2022 marks nineteen years post-kidney transplant for Mourning. On that day, he plans to celebrate the importance of organ donation as well as recognize all the adjustments he’s made over the years, such as eating a predominantly plant-based diet, exercising regularly, and avoiding drugs.

“I’m hoping I can celebrate another 19 years,” he said.