A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane
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
https://www.amazon.com/Rare-Like-Us-Finding-Plagued/dp/1543978819
A RARE Patient Advocacy (un)Summit
https://globalgenes.org/event/live/
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS
https://twitter.com/OnceUponAGene
https://www.instagram.com/onceuponagene.podcast/?hl=en
