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…
Alagille syndrome
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…
A Father’s Day in the life of a busy caregiver
When I sat down to write this column, I hit a bit of an initial roadblock. I’ve been writing columns here for over a year…
Targeted chemotherapy effective for HCC in woman with Alagille
A targeted treatment called transarterial chemoembolization (TACE) successfully helped control hepatocellular carcinoma (HCC), the most common type of liver cancer, in a young woman with…
Despite my worries, my son is excelling in his private swim lessons
My son Finley is a ball of energy. At times, he’s hard to contain. He’s opinionated and, like all 4-year-olds, has extremely selective hearing. And…
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- Sometimes I wonder what ‘stable’ means regarding my son’s health