March Is National Kidney Month: What To Know About The Rare Genetic Condition ‘Adpkd’

>>> MARCH IS NATURAL NATIONAL KIDNEY MONTH THAT WE ARE TALKING ABOUT POLYCYSTIC KIDNEY DISEASE, OR ADP KD. IT IS A RARE GENETIC CONDITION THAT CAUSES CYSTS TO FORM ON THE KIDNEYS AND IMPACTS HER ABILITY TO FUNCTION. ‘S LECTURE TO

RAISE AWARENESS ABOUT KIDNEY HEALTH IS FIVE-TIME A LITTLE GOLD MEDALIST A RETIRED PROFESSIONAL SWIMMER, MISSY FRANKLIN. GOOD MORNING. IT IS GREAT TO HAVE YOU THIS MORNING. >> GOOD MORNING. THANK YOU SO MUCH FOR HAVING ME.

>> WE ARE HONORED TO TALK WITH YOU. BEFORE WE DIVE INTO THE IMPACT OF THIS DISEASE THAT IT HAS HAD ON YOUR FAMILY PERSONALLY, TELL US WHAT YOU HAVE BEEN UP TO SINCE RETIRED FROM SWIMMING.

>> I AM JUST SO GRATEFUL FOR MY SWIMMING CAREER. I COMPETED IN THE 2012 AND 2016 OLYMPIC GAMES. TO WALK AWAY WITH FIVE GOALS AND A BRONZE IN TOTAL IS SO SURREAL. I AM SO THANKFUL FOR IT. I DID HAVE TO RETIRE

DUE TO INJURY IN 2018, WHICH RETIRING AT 23 YEARS OLD WAS DEFINITELY SOMETHING A LITTLE DIFFERENT. AS PART OF THAT DECISION WAS AT THE TIME, I AM SO THANKFUL FOR EVERYTHING. NOW I HAVE MORE TIME AND ENERGY TO

FOCUS ON OTHER ENDEAVORS LIKE PROFESSIONAL SPEAKING AND I STARTED MY OWN PODCAST. I HAVE A BEAUTIFUL 2 1/2 YEAR OLD BABY GIRL. IT HAS REALLY GIVEN ME THE TIME TO SHIFT MY FOCUS AND PASSION TO MY FAMILY, ULTIMATELY, WHICH IS MY NUMBER

ONE PRIORITY. >> CONGRATULATIONS ON YOUR BABY GIRL. YOU CERTAINLY HAVE HAD AN IMPRESSIVE CAREER. TALK WITH US ABOUT YOUR FATHER’S DIAGNOSIS OF ADP KD, AS WE TRANSITION. WHAT IS THE DISEASE AND HOW IS YOUR FATHER DOING NOW? >> ABSOLUTELY. YOU DID A GREAT

JOB FROM THE BEGINNING BUT TO ELABORATE, IT IS A RARE GENETIC CONDITION THAT CAUSES CYSTS TO FORM IN THE KIDNEYS AND IT LEADS TO A DECLINE IN KIDNEY FUNCTION THAT REQUIRES THE NEED FOR DIALYSIS OR TRANSPLANT. IT IS HEREDITARY. IT RUNS IN MY

FATHER’S FAMILY. IN ADDISON TO MY DAD, SOME OF HIS SIBLINGS AND ONE OF MY GRANDPARENTS WERE ALL DIAGNOSED WITH ADP KD. IT WAS AN EARLY DIAGNOSIS FOR HIM. I WAS QUITE YOUNG. TO BE HONEST, AT THE TIME I DON’T THINK I FULLY UNDERSTOOD WHAT

IT MEANT. AROUND 2018 HIS HEALTH REALLY JUST THAT STARTED TO DECLINE. IN EARLY 2022 WE LEARNED IT WAS RAPIDLY PROGRESSING AND HAD THE HARSH REALIZATION THAT HIS KIDNEYS WERE FAILING AND HE WAS EITHER GOING TO NEED DIALYSIS OR WE

WERE GOING TO NEED TO START LOOKING FOR A LIVING ORGAN DONOR BECAUSE HE WAS ALREADY ON THE ORGAN TRANSPLANT LIST. >> INCREDIBLE. WHAT WOULD YOU SAY IS THE MOST IMPORTANT THING YOU HAVE LEARNED AFTER WATCHING YOUR FATHER GO THROUGH THAT

JOURNEY WITH THE RARE KIDNEY DISEASE, AND WHAT ADVICE WOULD YOU HAVE FOR OTHER PEOPLE WHO MAY HAVE ONE OF THOSE SIMILAR DIAGNOSES? >> WE ARE SO THANKFUL. WE DID FIND A LIVING DONOR FOR MY DAD.

SHE HAPPENED TO BE AT A LIPID GOLD MEDALIST IN SWIMMING AS WELL, WHICH IS QUITE UNREAL. SHE IS NOW A PART OF OUR FAMILY. AND TRULY, I THINK HAD BEGUN TO UNDERSTAND THE IMPORTANCE OF DISEASE EDUCATION. I’M WORKING WITH

AMERICAN ARM ASCETICAL INC. TO SPREAD AWARENESS OF FAMILY HEALTH HISTORY CONVERSATIONS. ESPECIALLY WHEN IT COMES TO HEREDITARY DISEASES LIKE ADP KD. SITTING DOWN WITH YOUR FAMILY AND TALKING ABOUT HEALTH HISTORY SO THAT YOU CAN BE

PROACTIVE AND WORK WITH YOUR DOCTORS AND HEALTHCARE PROFESSIONALS ABOUT DIFFERENT WAYS TO IDENTIFY DISEASES AND DIFFERENT WAYS TO MOVE FORWARD BETTER BEST FOR YOU AND YOUR FAMILY. >> AN AMAZING STORY ABOUT THE DONOR. YOUR FATHER’S DONOR.

THAT IS SO INCREDIBLE. I’M SURE SHE IS PART OF THE FAMILY NOW, I WOULD IMAGINE. >> ABSOLUTELY. >> THAT IS WHAT I WOULD IMAGINE. I HAVE ANOTHER QUESTION. WHAT ADVICE WOULD YOU HAVE FOR FAMILY MEMBERS OF

THOSE WHO HAVE A SIMILAR DISEASE? HOW CAN THEY BEST SUPPORT THEIR FAMILY MEMBER LIKE YOU SUPPORTED YOUR OWN FATHER. >> THAT IS SUCH A GOOD QUESTION. THE CAREGIVERS ARE OFTEN OVERLOOKED AND IT CAN BE

ONE OF THE MOST EMOTIONALLY, AND SOMETIMES SZEKELY DAUNTING TASKS YOU CAN TAKE ON. IT WAS HARD FOR ME TO WATCH MY DAD GO THROUGH THAT. SAY YOU HAVE TO KEEP TAKING CARE OF YOURSELF. YOU CANNOT TAKE CARE OF OTHERS

IF YOU ARE NOT TAKING CARE OF YOU. REACH OUT FOR HELP. REACH OUT TO THE COMMUNITIES AROUND YOU. IT IS AN IMPORTANT THING TO BE HONEST AB

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