Marc Coronel shares his journey living with a rare kidney disease for the first FSGS Awareness Day

Most people in their 20s don't expect to be diagnosed with a serious, life-altering disease. But for AKF Ambassador and Kidney Health Coach Marc Coronel, this far-off hypothetical became his reality at just 26 years old. 

Marc went to a routine physical on his 26th birthday, where the doctor told him that if anything unusual came up, she would call him, but otherwise he should assume he had a clean bill of health. Unfortunately, Marc got a call two days later and found out he would need to get a biopsy and ultrasound done on his kidneys. It was when those tests were performed that Marc got the shocking news: he had focal segmental glomerulosclerosis (FSGS), a rare kidney disease that causes scarring in parts of the kidney filters known as glomeruli. Marc was completely baffled.

"I did a genetic test, and everything came back negative," he said when talking about potential origins of his disease. "[The doctors] didn't know where it came from."

For the first few years after his diagnosis, Marc was able to avoid dialysis, but that all changed in his early 30s. One day, he wasn't feeling well, so he told his wife he needed to use the bathroom. "I urinated and then I passed out," Marc said. His wife rushed him to the emergency room, where he was given a catheter to begin dialysis. For the next year and a half, Marc received in-center dialysis, for which he developed a number of coping mechanisms. 

"I read about 67 books on mental strength and adversity [while I was on] dialysis," Marc said. "I listened to speeches on YouTube about how to overcome your hardest trials and errors, and I would do yoga breathing techniques." 

He also was proactive in seeking a kidney transplant and getting himself added to not just one, but multiple waitlists at transplant centers across the country. "I was listed in California, Arizona, Baltimore and New York," Marc said. "I had to make sure that if [a] living donation didn't happen, a deceased [donation] would be able to happen."  But as it turned out, a living donation did happen, and it came from an unexpected source: a friend of Marc's sister named Shawna Robinson.

"When she saw my story, she said, 'I'll donate a kidney,'" Marc said. He was shocked, as he hadn't interacted with Shawna much before that day, but he gratefully accepted her generous offer. 

However, there were some roadblocks the two had to work through in order to move forward with the transplant. The first hospital they considered having the surgery performed at turned Shawna down as a donor because she was anemic. "She was a pescatarian, and she had low iron [levels], so she went to another hospital, and they said, 'all you need is iron infusions, and you're a solid candidate [to donate],'" Marc said. Shawna received the infusions, and after about a year, she was finally approved to give her kidney to Marc.  

The surgery took place on Dec. 10, 2019, at UCLA Health Medical Center. Recovery for both Marc and Shawna went smoothly, with Marc walking three laps around the hospital just 10 hours after the surgery was completed. "They told me, 'Seven laps around this hospital, and we'll write the discharge papers,'" Marc said his doctors told him when he asked what he needed to do to leave the hospital in a timely manner. "They discharged me three days [after the surgery] with no complications." 

Marc's transplant gave him newfound energy and reinforced his desire to be an advocate for other people battling kidney disease. It is this passion for advocacy that led him to reach out to AKF shortly after his diagnosis. Last month, Marc was one of the AKF Ambassadors selected to take part in AKF's Kidney Action Summit, where Ambassadors met with their elected officials on Capitol Hill to encourage them to support legislation that would protect living organ donors and oppose cuts to Medicaid funding.  

Today, as the country observes the first ever FSGS Awareness Day on June 10, Marc emphasized that building a sense of community is key for people like him who live with this disease. "Raising awareness of FSGS and for it to have its own day brings empowerment to those who feel alone," he said. "[It says] 'you are not alone in this journey because now we have our own day.'"

Marc encouraged people diagnosed with FSGS and any other kidney disease to educate themselves about their condition, and to ask questions of their providers — specifically providers who specialize in rare kidney disease. He also urged people to remember that vulnerability is a strength, not a weakness. "You [opening up] is an inspiration to others," he said. "I heal when I talk to other patients about my struggle. I heal through the process of advocating for others and speaking to them."

Visit our website for more information about FSGS.

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For more information about becoming a Kidney Health Coach, visit our website.