How we approached teaching our son about Alagille syndrome
Learning about Alagille syndrome has been a challenging task. My wife and I have done the research, read the studies, and combed through many…
Alagille syndrome
What we wished we’d known after a diagnosis of Alagille syndrome
We received the diagnosis that our son, Finley, had Alagille syndrome when he was 4 months old. All we’d known during his first few…
Rare liver cancer found in toddler with Alagille syndrome
A toddler boy with cirrhosis, or permanent liver scarring, due to Alagille syndrome developed a hepatoblastoma, a type of liver cancer that typically occurs…
Our son’s Alagille diagnosis was our introduction to rare diseases
Before having our son Finley, our exposure to the rare disease world was limited. Most people we’ve encountered since receiving his diagnosis have had the…
Why making time for doctor appointments is challenging
For me, one of the most dreaded parts of being the parent of a child with a rare genetic disorder is getting lab work done.
Bylvay eases itch, signs of liver damage in Alagille, trial data show
Daily treatment with Bylvay (odevixibat) safely and effectively eases itching and lowers blood bile acid levels, a sign of liver damage, in children and adolescents…
The complexities of parenting siblings of a chronically ill child
One thing I aim to do by writing this column is to bring some focus to what life looks like when raising a child…
The unique challenges of traveling with children who have liver disease
Traveling with small children is challenging. While the destinations that are visited and the memories that are created are worth it, getting there entails a…
World Liver Day to raise awareness of Alagille, other liver diseases
April 19 is a day set aside to raise awareness of liver diseases such as Alagille syndrome. It’s World Liver Day, a global…
Shoe shopping for a child with Alagille was surprisingly difficult
I love shoes. Shoe collecting has been a hobby of mine for quite some time. A good pair of sneakers or boots can take your…
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