Dangerous inheritance inspires siblings to help others in their mother's name

January 26, 2017
Group portrait of five adult siblings
Of these five siblings, only one has not been diagnosed with polycystic kidney disease: Hugh Allen, second from left. His brothers are Jack, far left, Dan and Fred, and his sister is Laurell Allen Millirons. Photo by Anne Thompson

When Dan Allen was diagnosed with polycystic kidney disease, a condition that causes cysts to grow in the kidneys, the Mount Pleasant dad who loved coaching his boys in soccer knew his family inheritance had kicked in.

“I was the first one to be diagnosed with PKD,” he said. “I inherited it from my mom, and I had a transplant eight-and-a-half years ago. Then my twin found out he had to have a transplant, and then my sister who’s eight years younger had to have a transplant. My youngest brother Jack has PKD. So four out of five siblings have had it. Three have already had transplants.”

Three children in the next generation have already been diagnosed as well. 

group portrait of the grandchildren of Lee Patterson Allen
Jackson, Sarah Beth, Hunter, Ciarra and Patterson Allen hold a picture of their grandmother in front of the lab named in memory of her. Photo by Anne Thompson

But the descendants of Lee Patterson Allen are not standing on the sidelines watching the disease progress unchecked. They’re fighting back with a $500,000 donation to what is now named the Lee Patterson Allen Transplant Immunobiology Laboratory at the Medical University of South Carolina, in memory of their former matriarch.

At the dedication ceremony, Allen’s daughter Laurell Millirons said her mother wanted future generations to have the best quality of life possible, knowing some descendants would have PKD. “With that in mind, we saw the biggest impacts to be in the area of viable replacement organs and rejection issues.”

She and her brothers liked what they saw at MUSC. “Your research of a targeted delivery immune suppressant is a subject close to our,” she paused, “transplanted kidneys.” There was soft laughter from the researchers and doctors on hand.

People listen in a hallway as Dr. Nadig speaks
Dr. Satish Nadig, left, speaks during a tour of the lab. Photo by Anne Thompson 

The research she referred to comes from the award-winning team of biomedical engineer Ann-Marie Broome, Ph.D.; immunology specialist Carl Atkinson, Ph.D.; and transplant surgeon Satish Nadig. Kidney transplant patients have to take immunosuppressant medications to keep their bodies from rejecting the organs, and that has serious side effects, including a greater susceptibility to cancer, infections and diabetes. Broome, Atkinson and Nadig are working on a way to deliver the immunosuppressants to the kidney and immediate surrounding area only, without affecting the rest of the body.

MUSC researchers are also using technology to engineer tissue from donated kidneys to create "renal patches" for people whose kidneys are failing. The patches would create urine to supplement the weakening kidneys and maybe keep the patients off dialysis. There are a couple of challenges, though. The body treats the engineered implant as an invader and blocks access to its blood supply. 

Nadig said having the support of Lee Patterson Allen’s family for those efforts and the rest of the lab's work means a lot. "Transplant is a team sport and no one is more integral to the team than the community. The Allens demonstrate how powerful the impact of community can be."

The lab is the only one of its kind in the state. It focuses on all aspects of organ transplantation, from donor management to recipient survival.

Dr. Prabhakar Baliga and kidney transplant recipient Everett German
 Dr. Prabhakar Baliga and kidney transplant recipient Everett German celebrate the lab's opening. Photo by Anne Thompson 

MUSC Department of Surgery Chairman Prabhakar Baliga said the biggest priority is increasing the number of living and deceased donors and improving the usability of more organs, which sometimes have to be flown across the country to get to recipients. “Today there are more than 100,000 patients waiting for a kidney transplant,” he said.

Atkinson said those patients need a unified effort. “Transplantation isn’t just an operation. We’ve been doing that for 50 years. It’s a whole process. The donor, the donor organ, the storage of the organ, the chronic rejection and all the medications. What this donation has done and this generosity has done is enable us to put all of that into one house.”

The MUSC Health Chief of Transplant Surgery, Derek DuBay, described the scope of the lab team’s interests. “They do research not only for kidney transplant but other abdominal organs and thoracic organs including liver, heart and lung. This lab is really a model within MUSC and nationwide.”

group portrait of Lee Patterson Allen's family
Lee Patterson Allen's family gathers for the lab's dedication. Photo by Anne Thompson 

Millirons said her mother hated knowing that she’d passed along PKD to four out of five of her children. “Thank you for allowing us this opportunity to permanently memorialize our mom in a way that would excite her and meet her desire of enhancing other lives. We look forward to the modern miracles you’re creating every day.”

Dan Allen, who became a founding member of the MUSC Living Donor Institute after receiving a kidney from his wife, said his mother would be proud of her children and the work being done at MUSC. “I’m sure she’s looking down at us and saying, ‘Thank you, well done’ to all of us who did this together.”