With Alagille syndrome, sick days can be concerning
My two young boys are in full-time day care or school, so we’re no strangers to illness in our household. Between the sniffles, the coughs,…
Alagille syndrome
Shipping medication is convenient, but it can also provoke anxiety
I’d describe myself as pretty easygoing. I’m by no means a control freak, but I’m also the type of person who likes paying bills one…
Elevated skull pressure leads to vision loss in Alagille: Case study
A young woman with Alagille syndrome (AGLS) developed profound vision loss due to increased pressure inside the skull following multiple brain bleeds, according to…
Managing potty training difficulties with my son with Alagille
Potty training, in my experience, has to be one of the hardest parts of parenting a young child. For my 4-year-old son, Finley, who is…
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…
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…
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