Over the weekend I sat in a room with about 100 pediatric nephrologists from around the world. Two from Bulgaria, someone from Italy, Germany.
I was speechless. That doesn’t happen very often as you might guess and it wasn’t because Bulgarians walked by me as I sat in a NYC conference room. It’s because for nearly 9 years there’s been a push to get ARPKD information to doctors and there I sat. I sat with two other moms, Michele and Kirsten as later we spoke about our perspectives on parting a child with ARPKD, or as in my and Michele’s case, two each. The PKD Foundation sponsored this Symposium to run right before the start of their three days of sessions. An ARPKD brochure was put in each attendees bag…and it had Gage’s cute picture on the cover.
Again. Speechless.
This is a long time coming. Nearly the entire time I’ve been co-coordinator for the ARPKD Chapter and offering support to other parents of kids with ARPKD (with Michele and Kirsten) we’ve been wanting a greater flow of information to doctors who may be on the front lines to parents diagnosed with ARPKD. Because, let’s face it, 1:20,000 occurrence is rare and we know that all doctors can’t know about every solitary rare disease. So there we were. Who knows? Maybe next year we’ll be talking to neonatologists.
Anything can happen.
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