PKU: A Life-Giving Diagnosis - a podcast by Grey Genetics
from 2018-11-27T10:30:04
Kevin Alexander is a professional videographer. He also has an inherited metabolic condition, PKU (phenylketonuria). Thanks to Newborn Screening, Kevin was diagnosed with PKU just 9 days after birth and immediately put on dietary treatment. With a carefully monitored diet, Kevin has been able to live an otherwise normal life. In the 1960s, PKU was the first condition to be tested for as part of Newborn Screening. Newborn screening now includes up to 60 disorders, depending on the state, and can provide a timely and life-saving diagnosis for many infants. Through multiple video projects, Kevin has worked to raise awareness of PKU and of Newborn Screening more broadly. He is now also starting a podcast related to PKU! Watch for the first episode on PKU Awareness Day (December 3) and regular episodes starting in January.
Interview Reference Points:
What is PKU? Why is it diagnosed through Newborn Screening (NBS) and how is it treated?@ 1:40
Kevin’s diagnosis with PKU and ongoing management by metabolic team at Tulane @ 6:34
Feeling the difference of PKU @ 11:03
Living with PKU as an adult and the benefit of newer medications @ 14:54
In 2011, Kevin releases a short documentary My PKU Life and becomes more involved in PKU and NBS advocacy @ 16:44
Social Media as a tool for connecting with other people with PKU @ 18:48
Life with untreated PKU and the life that NBS has made possible - @ 20:06
Parents’ Privacy Concerns and Newborn Screening (NBS) @ 23:00
PKU support system on Facebook @ 27:46
The Medical Nutrition Equity Act @ 31:20
Meeting Katy and her family: a late PKU diagnosis @ 35:41
Links and Resources
Kevin’s Facebook page
Kevin’s short documentary My PKU Life
Kevin’s short documentary Kevin's YouTube Channel
Kevin featured in a recent CRM Studios blog post
More on Newborn Screening: Baby’s First Test
More on the Medical Nutrition Equity Act
Kevin's new podcast! PKU Life Podcast with Kevin Alexander
PKU Life Podcast Facebook page
PKU Life Podcast on Twitter@PKULifePodcast
PKU Life Podcast on Instagram @pkulifepodcast
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