Parenting has taught me a lot. I knew I would be teaching my kids, but I also knew I’d be learning from them along the…
Alagille syndrome
ALAGILLE SYNDROME
NewsWorld Liver Day promotes small habits that can yield big health gains
April 19 marks World Liver Day, a global effort to raise awareness about liver health and the growing burden of liver disease. This year’s…
ALAGILLE SYNDROME
ColumnsLearning how to let go of worry isn’t easy as an Alagille parent
I’ve been writing this column for Liver Disease News for just over two years now. When I brainstorm ideas for what to write, I love…
ALAGILLE SYNDROME
ColumnsMy son’s stubborn determination will aid him in his battle with liver disease
It’s truly rewarding as a parent to see the things that make your children proud. For my 5-year-old son, Finley, it’s making his bed every…
ALAGILLE SYNDROME
ColumnsI’m grateful to make connections with the rare disease community
Being thrust into the world of rare diseases has been interesting. If you don’t have a personal connection to rare diseases, it’s easy to feel…
ALAGILLE SYNDROME
ColumnsAs our son grows, we’ll always seek opportunities to advocate for him
Lately, I’ve found it easier to settle into the flow of daily life than in previous years. Routines have developed, and the weekly rhythms now…
ALAGILLE SYNDROME
NewsFirst reported case links Alagille syndrome with biliary atresia
A baby girl with Alagille syndrome and related liver problems that were not responding to standard medication was also diagnosed with a rare liver…
ALAGILLE SYNDROME
ColumnsI’m learning how to let go of worry and embrace the moment
Now that my son Finley is 5, I’ve been reflecting a lot. That’s why so many of my recent columns have focused on the milestones…
ALAGILLE SYNDROME
ColumnsSupporting my oldest son, who’s growing up with a chronically ill sibling
While my “Be Rare with Finn” column focuses on my youngest son, Finley, and his journey with Alagille syndrome, Finley is not my only…
ALAGILLE SYNDROME
NewsBlood bile acids predict liver outcomes in Alagille syndrome children: Study
Children with Alagille syndrome who have lower blood levels of bile acids, the main component of the digestive fluid bile, have better long-term liver…
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