by Sydney Johnston | Oct 15, 2022 | ARPKD, Caregivers, Family Life
Published on October 15, 2022 | Today is Pregnancy and Infant Loss Remembrance Day. Every October 15, we honor we honor lost pregnancies and infant deaths which includes miscarriages, still births, and of course, ARPKD. A rare genetic disorder, autosomal recessive...
by Sydney Johnston | Dec 7, 2021 | ARPKD, Family Life
Published on December 7, 2021 | Since Kari Lusby’s son, Honor, was diagnosed with PKD at age 4, she and her family have managed his disease by focusing on the main tenets of good health. Nutrition, hydration, movement, sleep, mindset, and mental toughness. As Honor...
by Sydney Johnston | Mar 2, 2021 | ADPKD, Family Life
Published on March 2, 2021 | As a parent, you may struggle with how and when to talk about PKD in your family. While every child and family is different, Gillian Mayersohn, Psy.D., a pediatric psychologist at St. Louis Children’s Hospital, says in general, talking to...
by Sydney Johnston | Nov 24, 2020 | Awareness, Family Life
Published November 24, 2020 | It’s no secret that 2020 has been a challenging year for all of us. Despite its many ups and downs, there’s still a strong sense of thankfulness and gratitude within the PKD community. Walk Coordinator Michelle Hoffmann...
by PKD Foundation Staff | Jun 17, 2018 | Awareness, Family Life
Hello, and Happy Father’s Day to all the dads! My name is Ed McVey and my daughter Meredith has PKD. When I was asked to tell our story for this blog post, I realized how important it is to talk about the disease and raise awareness. My daughter was diagnosed with PKD...
