Due to itching at nighttime, children with Alagille syndrome often experience substantial problems getting a good night’s sleep, leading to poor rest not only…
Alagille syndrome
Rare genetic liver conditions like progressive familial intrahepatic cholestasis (PFIC) and Alagille syndrome pose a substantial financial and quality-of-life burden on families, a study…
ALAGILLE SYNDROME
ColumnsTaking steps to manage my son’s itch as the heat rises
Living in the Pacific Northwest, I look forward to the changing of the seasons. While I certainly enjoy aspects of the fall and winter, I…
ALAGILLE SYNDROME
ColumnsWatching my son grow and realizing he’s not defined by his rare disease
One of my favorite things about raising kids is seeing them figure out what they like doing, what sparks their interest and joy. When they…
ALAGILLE SYNDROME
NewsFor girl in Asia, limited access to genetic testing delayed an Alagille diagnosis
Due to limited access to genetic testing, a young girl with Alagille syndrome in Indonesia was misdiagnosed in infancy with biliary atresia —…
ALAGILLE SYNDROME
ColumnsBeing brave will serve my son with Alagille syndrome well
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
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…
Recent Posts
- When liver disease complicates physical intimacy
- What 5 years of listening taught me about a silent disease
- Keeping up with medical appointments, even when my son is stable
- Let’s go to the movies and forget about living with chronic illness for a day
- Remembering to always pack my son’s meds was a hard lesson to learn