New battles royales as new medicines are added to the mix
My son Finley is like most other kids his age: He benefits from routine and likes knowing what to expect. He’s not a fan of…
Alagille syndrome
Alagille syndrome symptoms vary by gene mutation, study finds
People with Alagille syndrome display different disease characteristics depending on whether the disease-causing mutation is located in the JAG1 gene or the NOTCH2 gene,…
Preparing my son with Alagille syndrome, and myself, for surgery
Preparing a child for surgery is scary, as I’m being reminded. My 4-year-old son, Finley, is scheduled to have a small procedure to fix a…
Sometimes I wonder what ‘stable’ means regarding my son’s health
Rare diseases bring a lot of unknowns to the lives of patients, caregivers, and family members. We caregivers often worry about what might be looming…
New mutation props up woman’s Alagille syndrome diagnosis
An unreported mutation in the JAG1 gene was identified as the likely cause of Alagille syndrome in a 28-year-old woman, a case report from…
My son has his own understanding of his liver disease medications
Every time I meet another family raising a child with Alagille syndrome, the topic of medication comes up. I have found that parents and…
A big-boy bed has been a positive change for our son with Alagille
Bedtime has been tricky in my house over the past few months. My son Finley, who was born with Alagille syndrome, just doesn’t seem…
Scientists ID ways to aid Alagille syndrome diagnosis in infants
In infants younger than 3 months, identifying heart problems and distinctive facial features, as well as blood markers and certain liver tissue abnormalities, may aid…
Letting go of worry on our Universal Studios vacation
Traveling with young kids is always a bit of a gamble. Now that my boys are 7 and 4, they’re a heck of a lot…
Learning to worry a little less as we stick to our son’s care plan
During my time writing columns for Liver Disease News, I’ve often shared about themes like worry, stress, and anxiety. These are common feelings when you’re…
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