Setting my worries aside as my son tries different activities
My son Finley is a little ball of energy. He is super active and doesn’t like to rest or sleep. At 4 years old, he’s…
Alagille syndrome
New JAG1 mutation seen as likely cause of Alagille case
Researchers have identified a new mutation in the JAG1 gene as the likely cause of Alagille syndrome in an 18-year-old man who also had persistent…
Learning to give grace to our sometimes mercurial 4-year-old
Saying that 4-year-olds can have crazy attitudes is not a groundbreaking statement. It’s not unusual for my son Finley to have wild swings from happy…
Surgery eases symptoms of rare skull condition in boy with Alagille
Craniosynostosis — a condition usually identified in infancy where the bones in a baby’s skull join together prematurely — led to elevated pressure in the…
Why ultrasounds bring out my parental anxiety
Taking my son Finley to various doctor appointments is nothing new. Since he was born a month early, visiting doctors and seeing various specialists…
American Liver Foundation gears up for advocacy summit
Patients, caregivers, and supporters will head to Washington later this month to advocate for policies to improve life for people living with fatty liver…
Focus of World Liver Day this April 19 is role of diet in liver health
Supporters are gearing up for World Liver Day on April 19 — marked by a global campaign to raise awareness about liver health and…
FDA approves Livmarli oral tablets for PFIC, Alagille
The U.S. Food and Drug Administration (FDA) has approved an oral tablet formulation of Livmarli (maralixibat) to treat progressive familial intrahepatic cholestasis (PFIC)…
Preparing my son for warmer weather, which exacerbates his itch
Here in the Pacific Northwest, we are inching into spring. This season brings days that tease us about what the weather could be. A recent…
COVID-19 complicates vascular problems in woman with Alagille
A 34-year-old woman with Alagille syndrome and vascular problems — who had been implanted with a stent for her narrowed pulmonary arteries — experienced…
