Know your risks – and options – this National Liver Awareness Month
October is National Liver Awareness Month and Liver Cancer Awareness Month, and advocacy organizations across the U.S., including the American Liver Foundation (ALF), are…
Alagille syndrome
Optimism replaces worry following a post-surgery scare
Back in August, I wrote about managing my worries as we prepared for a small surgery to correct a hydrocele in our 4-year-old son,…
Adapting to a new routine is made harder by regular hospital visits
Our family has been extremely busy lately. The beginning of the school year is always an exciting yet exhausting time as we settle back into…
Bylvay now approved in Canada to treat adults, children with Alagille
Bylvay (odevixibat), an oral medication used to treat cholestatic pruritus — severe itching that results from a buildup of bile acids used in digestion —…
Savoring the everyday moments that bring joy to our lives
When my youngest son, Finley, was diagnosed with Alagille syndrome, a million questions flooded my mind. I wanted to know if he’d be able…
The world spins forward as our son with Alagille advances to pre-K
When I brainstorm ideas for columns, I often end up focusing on similar themes, such as anxiety, stress, complications, difficulties. All those are definitely…
New Alagille syndrome therapy named ART4 gets FDA designations
The U.S. Food and Drug Administration (FDA) has granted orphan drug and rare pediatric disease designations to ART4, an experimental therapy for Alagille syndrome…
Facing unexpected complications after a routine surgery
The last few weeks have been a roller coaster as we near the end of summer, prepare for school to start, and navigate a surgery…
New battles royales as new medicines are added to the mix
My son Finley is like most other kids his age: He benefits from routine and likes knowing what to expect. He’s not a fan of…
Alagille syndrome symptoms vary by gene mutation, study finds
People with Alagille syndrome display different disease characteristics depending on whether the disease-causing mutation is located in the JAG1 gene or the NOTCH2 gene,…
Recent Posts
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