Ending PKD in Your Family
After a PKD diagnosis, there is a way to stop it with PGT-M
Our ambassador Tim Francis and his wife Michelle discuss having children via PGT-M
Polycystic Kidney Disease (PKD) is currently an incurable condition and is the leading cause of kidney failure for people under 50. It affects over 600,000 people in the US, with a 50% chance of being passed down to each child of a PKD impacted parent. While a diagnosis of PKD can be devastating, there is a way to prevent PKD from being passed down to future generations in your family.
ENDING PKD IN THE NEXT GENERATION
pkDO will fund pre-implantation genetic testing (PGT-M) for 100 families, to enable a new generation of children to be born without PKD.
Preimplantation genetic testing (PGT-M), the same proven technology that is already being used to prevent BRCA, Tay-Sachs, and other genetic conditions from being passed down, can be used to end PKD in your family. The medical community is largely unaware that this same solution can be used to end PKD. pkDO is creating the patient activism and resources necessary to change this.
Dr. Erica Johnstone
Reproductive Specialist, University of Utah Health
“PGT-M gives hope to families to know that, not only will their children not be affected, but their children’s children will also not be affected by this disease.”
Dr. Jovana Lekovich
Reproductive Specialist, RMA of New York
“A lot of people connect meaning and purpose in life to having children. If that is taken away by a medical condition, it is such a privilege and honor to be able to help people with this.”
The most common form of PKD, autosomal dominant PKD (or ADPKD), affects in 1 in 500 people, and has a 50% chance of being passed onto your children and grandchildren. It is the second most common cause of kidney failure and needing dialysis before the age of 50. The less common form, autosomal recessive PKD (or ARPKD), is associated with even higher mortality than the ADPKD, and as such, is found in only 1 in 20,000 live-born babies (as most affected fetuses will die in utero, before birth). If both you and your partner are carriers for ARPKD, it will be passed onto 25% of your children.
Assisted reproductive technologies, namely in vitro fertilization (IVF) and pre-implantation genetic testing of embryos for known genetic conditions (PGT-M), have been used successfully since 1990 to identify embryos that do not contain a genetic mutation before the pregnancy would even occur, thus preventing propagation of the mutations to the offspring.
The combination of PGT-M and IVF will stop PKD from spreading further in the family tree. PGT-M is currently the only known way to eliminate PKD.
How it works
During the IVF process, ovaries are stimulated to mature multiple eggs which are then retrieved via a low-risk, minimally invasive quick procedure under sedation. The sperm is used to fertilize the eggs and create embryos, which are then cultured to the blastocyst stage of development. At this stage, an embryo biopsy is performed, and the embryos are frozen. Embryo biopsy is a process by which embryologists take a few cells from the outer part of the embryo which will give rise to the future placenta. It is not damaging to the embryos, and their implantation potential is not diminished by the biopsy. Biopsy specimens are sent to a laboratory specializing in PGT for analysis. Test results typically take 1-3 weeks. Following this, healthy embryos that do not have the disease can be transferred to the womb for a PKD-free pregnancy. With four successful PKD-free births in 2023, we look forward to supporting more PKD-free pregnancies in 2024
Every family has a story. You can change the ending.
Learn more about how PGT-M can end PKD in your family.
Donate Now to Support Families Fighting PKD
The PKD Outreach Foundation (pkDO) is honored to work with medical specialists to support our mission to end PKD. Please consider donating to help fund families to end PKD in their family.