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
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…
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…
Recent Posts
- Large VA study reveals hidden liver damage in US military veterans
- Uncle’s living donation saves 1-year-old girl with liver failure
- With FDA support, developer planning late-stage trial of belapectin for MASH
- A Q&A with med students helps to keep the ‘patient’ in patient care
- Heart risks in Alagille syndrome may go beyond artery narrowing