GSD1b Strong Patient Spotlight: Sophie

We have an extra special #warriorwednesday GSD1b Strong: Patient Spotlight today. Margot LaFreniere, cofounder of Sophie’s Hope Foundation and mom of Sophie, shares their family’s story with GSD1b, including a winding road to diagnosis and a look into some of the struggles GSD1b families face as they move through big life transitions.

We really appreciate Margot’s willingness to share the role that mental health plays in the management of GSD1b too. This is something that many patients and caregivers express, and something that we want to highlight in our community— life with 1b impacts both physical and mental health. Caring for the whole patient and caregiver system means recognizing both.

Huge thanks again to Sophie and her family for sharing their story and all they do to improve the lives of GSD1b patients and caregivers.

#curegsd1b #glycogenstoragedisease #glycogenstoragedisease1b #gsd1b #glucogenosis1b #glucogenose1b #glikogenoza1b #Glykogenose1b #raredisease #neutropenia #empagliflozin #hypoglycemia #metabolicliverdisease #geneticdisease #patientadvocacy #immunecompromised #inheritedmetabolicdisease #vongierkedisease #glycogenstoragedisease1a #supportgroup #peersupport #patientledadvocacy #pao #tellyourstory #storytelling #strongertogether

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