Building a PKD-Free Future Webinar

pkDO founder Richard Kellner recently spoke with PKD experts Dr Heedeok Han and Dr Sinem Karipcin of the Columbia University Medical Center, genetic counselor at CUMC and parents Katherine and Michael Black about living with PKD and ways to prevent it from being passed down to the next generation. 

0:00 –2:51 pkDO founder Richard Kellner talks about his family’s history with PKD and the explains the myth that there’s nothing to do about the progression of the disease. This webinar discusses medically-proven ways to stop PKD in the next generation.

2:51 – 5:02 Kaitlyn Phoenix, Deputy Editor at Hearst Health, introduces panelists Dr Heedeok Han, Associate Director of PKD Center at the Columbia University Medical Center, Dr Sinem Karipcin, IVF Specialist and Assistant Professor of Obstetrics and Gynecology at the Columbia University Medical Center, Stephanie Galloway, Genetic Counselor at the Columbia University Medical Center as well as Katherine and Michael Black, a couple living with PKD and the proud parents of PKD-free baby.

5:03 – 8:25 Dr. Han describes what is ADPKD and how prevalent it is in the population. It is one of the leading causes of end-stage kidney disease globally, accounting for 5 – 10% of cases. It is an autosomal genetic condition and often passed down through the family. Even if only one parent has this disease, there is a 50% chance it will be passed onto the children. Dr. Han describes how PKD kidneys develop cysts and decline. The disease is not just restricted to kidneys: it can affect the liver, spleen, blood vessels and other parts of the body.

8:42 – 12:00. Genetic Counselor Stephanie Galloway shares stats on the hereditary nature of PKD and walks through the process of how she counsels parents with PKD who are looking to start a family. She discusses conceiving naturally versus conceiving through assisted reproductive technologies, including IVF using genetic testing (PGT-M).

12:12 - 17:36 Dr Karipcin describes the process of pregenetic testing (PGT-M) for a singular disorder such as PKD. The process includes determining the PKD markers within a family, using IVF to create embryos, and testing embryos prior to their transfer into the womb. This method helps couples stop PKD in the family.

17:50 - 21:10. Michael Black talks about his family’s history with PKD and being tested when he was a child, with negative results. His diagnosis came later in his life and his PKD progressed quickly, resulting in a kidney transplant in 2013.

21:15 – 31:28 Katherine Black shares their decision to use IVF and describes their long journey to conceiving a PKD-free child. After many failed attempts at IVF, they are adamant that using the right clinic makes all the difference.

31:40 –32:17 Michael and Kate describe the relief of ending PKD in his family, the reaction from his extended family and the relief of knowing that their child will not have kidney disease.

32: 30 – 38:27 Dr Han discusses ways patients can work with their medical providers to slow the progression of PKD, with lifestyle modifications including exercise, lowering hypertension, low sodium diets as well as medications including Tolvaptan. He also counsels on using PGT-M and IVF to increase awareness on how to end PKD.

38:28 – 39:49 Kaitlyn Phoenix and Richard Kellner wrap up and provide a progress report on the 100 PKD-free Babies Initiative.

39:50 - 40:34 If you want more information about what we do or would like to receive funding for PGT-M, follow us @pkd_outreach or visit pkDO.org/babies.