EPISODE · Sep 3, 2020 · 27 MIN
A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane
from Once Upon A Gene · host Effie Parks
A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane If you haven’t listened to Episode 38, Rare Like Us with Taylor Kane, go back and listen to that episode here. Taylor Kane's mom, Diane Kane, had two toddlers when her husband was suddenly diagnosed with a rare disorder called Adrenoleukodystrophy (ALD). I'm in awe of her strength, grit and grace as a caregiver to her husband John, all while being a new mom, working and preparing for all the ways ALD would disrupt her family and change it forever. EPISODE HIGHLIGHTS What is ALD and what are the symptoms? What happened after the Adrenoleukodystrophy (ALD) diagnosis? How were you able to manage and cope with the diagnosis and life at that time? What wisdom can you share with other caregivers? LINKS AND RESOURCES MENTIONED EPISODE 038 - Rare Like Us with Taylor Kane https://effieparks.com/podcast/episode-38-rare-like-us-with-taylor-kane Rare Like Us https://www.amazon.com/Rare-Like-Us-Finding-Plagued/dp/1543978819 A RARE Patient Advocacy (un)Summit https://globalgenes.org/event/live/ Global Genes https://globalgenes.org/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify Apple Podcasts Stitcher Overcast CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
What this episode covers
A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane If you haven’t listened to Episode 38, Rare Like Us with Taylor Kane, go back and listen to that episode here. Taylor Kane's mom, Diane Kane, had two toddlers when her husband was suddenly diagnosed with a rare disorder called Adrenoleukodystrophy (ALD). I'm in awe of her strength, grit and grace as a caregiver to her husband John, all while being a new mom, working and preparing for all the ways ALD would disrupt her family and change it forever. EPISODE HIGHLIGHTS What is ALD and what are the symptoms? What happened after the Adrenoleukodystrophy (ALD) diagnosis? How were you able to manage and cope with the diagnosis and life at that time? What wisdom can you share with other caregivers? LINKS AND RESOURCES MENTIONED EPISODE 038 - Rare Like Us with Taylor Kane https://effieparks.com/podcast/episode-38-rare-like-us-with-taylor-kane Rare Like Us https://www.amazon.com/Rare-Like-Us-Finding-Plagued/dp/1543978819 A RARE Patient Advocacy (un)Summit https://globalgenes.org/event/live/ Global Genes https://globalgenes.org/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify Apple Podcasts Stitcher Overcast CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
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A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane
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