Basketball Hall of Famer Alonzo Mourning shares his kidney disease journey and encourages others to become APOL1 aware

Alonzo Mourning is a paid spokesperson for Vertex Pharmaceuticals. AMKD Awareness Day is sponsored by Vertex Pharmaceuticals Incorporated.

Please tell us about your journey with kidney disease and how it has impacted your life. 

I was at the height of my basketball career when my world was turned upside down. In 2000, I was playing for Team USA during the Summer Olympics in Sydney when I began feeling lethargic and noticed extreme swelling in my legs and feet. But at the time, I just chalked it up to my rigorous training and travel schedule. After the Olympics, I had a routine physical that showed abnormalities in my kidneys, which eventually led to my diagnosis of a disease called focal segmental glomerulosclerosis (FSGS), which is one form of APOL1-mediated kidney disease (AMKD). 

I worked with my doctors and nephrologist to figure out the best ways to manage my disease and overall health. In 2003, I received a kidney transplant from my cousin, for which I'm incredibly grateful. Through hard work and determination, I was able to recover and get back out on the court – and continued playing with the Miami Heat until I retired in 2008. To this day, I still get regular checkups, live a healthy lifestyle, and work closely with my doctors to stay as healthy as possible.

Today, I'm proud to be an active kidney health advocate and to contribute my story to raising awareness of AMKD, because I know there are others out there who may be living with kidney disease and not even know it. I've partnered with Vertex Pharmaceuticals to launch Power Forward, an AMKD awareness initiative to empower others to take charge of their kidney health, know their family history of kidney disease, and get tested. 

Looking back, how did you feel about your kidney disease diagnosis, and how did you react when you received the results of your genetic test that showed your kidney disease was APOL1-mediated kidney disease?

When I first learned of my diagnosis in 2000, I was terrified, mostly because I knew nothing about this disease or what might happen to me. I was also frustrated with myself for ignoring the symptoms at first. However, I developed a trusting relationship with my doctors and committed to learning as much as possible. Knowledge is power, and once I learned more about FSGS, I felt more confident about facing my condition. 

When I learned about the genetic roots of my condition, including the two APOL1 genetic variants, I felt relieved to understand how and why I could have developed kidney disease when I was otherwise (seemingly) healthy and in peak physical shape. 

What initially prompted you to do genetic testing – did you have any hesitations about doing it, and if so, what helped you overcome those concerns?

At the time of my diagnosis, the link between APOL1 genetic variants and kidney disease hadn't been discovered yet. Years later, my nephrologist, Dr. Gerald Appel, told me about a research study that was being conducted to help better understand the type of kidney disease I had and its possible genetic origins. Dr. Appel said they were looking for additional samples from people who had this kidney disease, and after discussing it further, I decided to participate and provide a blood sample and biopsy to the study. 

Because I had built such a strong, trusting relationship with Dr. Appel over the years, I felt comfortable having these discussions with him — and felt comfortable participating in the research study and helping advance research and understanding of this disease. 

Through this process, I contributed my genetic information to the landmark study in 2010 that revealed the genetic origins of AMKD. Without it, I would never have known the cause of my disease and understood that it was in my genes; it wasn't my fault that I developed AMKD. Learning that has been empowering, and now I have an opportunity to share what I've learned with others. 

Could you share with us why it's important for you to raise awareness about APOL1-mediated kidney disease and support AMKD Awareness Day on April 30? 

It's important for all of us to take charge of our health, however, I do recognize that many people may not have heard of AMKD and/or may not know how to approach conversations about kidney health with their families or their doctor. I'm grateful to the American Kidney Fund for spearheading the establishment of a dedicated day of awareness, and I'm thrilled to have the opportunity to bring more focus on AMKD and provide informational resources to those who need them. 

Through this initiative, I hope that we will be able to empower others to understand their family history of kidney disease, see a doctor regularly to discuss their personal risk of developing AMKD, and get tested if needed. 

What is one thing about kidney disease — or AMKD in particular — that you wish more people knew or understood?

Thirty-seven million Americans experience chronic kidney disease, and many others are at risk and may not even know it. Many of those are people of African ancestry, who are four to five times more likely to develop kidney failure than White Americans. Because of the rapidly progressive nature of the disease, AMKD often leads to kidney failure, requiring life-long dialysis or a kidney transplant, or even death. When detected early, there's a higher chance of being able to slow that progression, with the right care, and hopefully achieve a better outcome. 

This is a silent epidemic in our community and addressing it can feel overwhelming, but we must act urgently. Increasing knowledge and taking control will benefit our community. 

Take it from me: being proactive about your health, and understanding what's in your genes, can change everything. Let's power forward, together.