Brooke Ramirez’s pregnancy with her first daughter went as planned, and her new baby Trinity passed her developmental milestones. It wasn’t until she was five months old that they noticed any symptoms.
Kealey-Shay Spolijarevic has progressive familial intrahepatic cholestasis (PFIC), a rare hereditary disease in which an individual is unable to properly remove bile acids from their liver. She describes an overall of her diagnostic journey.
‘Even just getting a common cold can have a big impact on my health, a cold or a flu can be a lot more severe for me so I spent a lot of time away from school’
«Mon état est plutôt bon. Les autres types seraient plus graves et causeraient plus de problèmes, en particulier dans la petite enfance. Mais aussi, beaucoup de mes symptômes n’ont pas été remarqués dans la petite enfance parce qu’ils n’étaient tout simplement pas perceptibles », a déclaré Spoljarevic.
The challenges faced and isolation felt when living with a rare disease is something Kealey-Shay Spoljarevic knows well, after being diagnosed about nine years ago.
Like so many young couples, my husband and I knew we wanted to start a family. That day came on May 31, 2000, when Evan, our first of three sons, was born. Despite jaundice that appeared for about a week after his birth, he was as healthy a newborn as any parent could hope for.
SALISBURY — After a long struggle, 10-year-old Trey Kearns is ready to thrive. Trey, who is from Eden, Maryland, suffers from the rare genetic condition known as PFIC, or progressive familial intrahepatic cholestasis. It typically leads to liver failure before adulthood and causes an all-over itch that can lead kids to scratch incessantly.
Kennedie Knakmuhs is 2 1/2 years old and a liver transplant recipient, so her family in Parker, CO must take many extreme measures to protect her during the COVID-19 Pandemic. Kennedie’s mother, Emily, shares more about her daughter’s rare and life-threatening disease known as PFIC, and she offers advice to other families with immunocompromised loved […]
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