A few years ago, I took a DNA test to learn more about my heritage and better understand the health risks that might be tucked…
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ALAGILLE SYNDROME
ColumnsWho would’ve guessed a child growth chart would be my nemesis
Raising my son Finley, who was born with Alagille syndrome, has taught me to adapt to countless challenges, including new medications, unfamiliar terminology, and…
FATTY LIVER DISEASE
ColumnsWhat to expect from a liver transplant evaluation
After I learned that my metabolic dysfunction-associated steatohepatitis (MASH) had pushed my liver to its limits, I also learned I might someday need a…
ALAGILLE SYNDROME
ColumnsCelebrating a major milestone with a 5th birthday party for the ages
One of the greatest joys of watching our son Finley grow up has been witnessing his growing appreciation for milestones and special occasions. Most recently,…
ALAGILLE SYNDROME
ColumnsI’m grateful my son has a care team that truly cares
When you’re raising a child with a rare disease like Alagille syndrome, you become very familiar with their care team. My 5-year-old son, Finley,…
FATTY LIVER DISEASE
ColumnsOne of my superpowers for MASH is defiance in the name of compliance
When I was a kid, I was always kind of a rebel. I didn’t respond well to authority. I wanted to be as free as…
ALAGILLE SYNDROME
ColumnsIn the Alagille community, we found people who are speaking our language
I had never heard of Alagille syndrome until my son Finley was diagnosed with it. And in the five years since he was born,…
FATTY LIVER DISEASE
ColumnsWhile you were asleep: Nighttime may affect your liver more than you think
A few years ago, I bought myself a fitness watch. As I worked to rebuild my health after being diagnosed with metabolic dysfunction-associated steatohepatitis…
ALAGILLE SYNDROME
ColumnsA whiff of dish soap brings back memories — and medical trauma
Our brains work in fascinating ways. One moment, you are in the middle of a completely mundane task, and suddenly, you are whisked back in…
FATTY LIVER DISEASE
ColumnsGetting ahead of concerns about fatty liver disease in children
Growing up, I was very much a daddy’s girl. My dad had a lively personality that helped him make instant friends wherever he went, sometimes…
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