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…
Be Rare with Finn - a Column by Jay Sandstrom
ALAGILLE SYNDROME
ColumnsMy 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…
ALAGILLE SYNDROME
ColumnsA 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…
ALAGILLE SYNDROME
ColumnsLetting 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…
ALAGILLE SYNDROME
ColumnsLearning 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…
ALAGILLE SYNDROME
ColumnsA 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…
ALAGILLE SYNDROME
ColumnsDespite 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…
ALAGILLE SYNDROME
ColumnsThe mistake that stands out in an already difficult morning
I’m not a morning person. Truthfully, nobody in my household is. Still, our weekday morning routine frequently features at least one sleepy and grumpy individual.
ALAGILLE SYNDROME
ColumnsWith 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
ColumnsShipping 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…
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