Loving Large: A Mother's Rare Disease Memoir With Patti Hall
Once Upon A Gene
ONCE UPON A GENE - EPISODE 033 Loving Large: A Mother's Rare Disease Memoir With Patti Hall This episode is about the larger-than-life love that a mother has for her son. Patti Hall is the author of the book, Loving Large: A Mother's Rare Disease Memoir. In reading her book, I learned a lot about the rare disease called gigantism. I’m so grateful when people share their stories about the rare disease life because it’s so important in so many ways and you never know who will be touched by it. EPISODE HIGHLIGHTS Why did you write this story? What is your son's diagnosis and what was happening in those early days? How long did it take to have a treatment plan? When you were searching for doctors and surgeons, were you finding they were intrigued or afraid to get involved? Was writing this memoir therapeutic for you? What would you say to parents with young babies who are just receiving a diagnosis? What would you say to parents like me who have a story to tell, but they aren't writers? LINKS AND RESOURCES MENTIONED Loving Large: A Mother's Rare Disease Memoir https://pattimhall.com/loving-large-book/ Patti Hall Website https://pattimhall.com/ Patti Hall Facebook https://www.facebook.com/pattimhallwriter Patti Hall Instagram https://www.instagram.com/patti_m_hall/ Patti Hall Twitter https://twitter.com/pattimhall 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/
Fecha de Publicación: 8 de junio de 2020
Duración: 41 min
Añadir a Playlist
Episodios Relacionados
-
Preconception & Prenatal Genetic Testing 101: A Conversation with Genetic Counselor, Natalie Richheimer
enero 16, 2025 -
Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples
enero 9, 2025 -
Eight Years of Searching: A Determined Family’s Quest to Cure an Ultra-Rare CLCN6 Mutation with Kristin & Paul Purdy
enero 2, 2025 -
Chasing Glimmers - From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum - with Megan Gillet
diciembre 19, 2024 -
The Gift of Grace: A Holiday Heart-to-Heart for Caregivers
diciembre 12, 2024