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…
Alagille syndrome
ALAGILLE SYNDROME
NewsBylvay 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 —…
ALAGILLE SYNDROME
ColumnsSavoring 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…
When I brainstorm ideas for columns, I often end up focusing on similar themes, such as anxiety, stress, complications, difficulties. All those are definitely…
ALAGILLE SYNDROME
NewsNew 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…
ALAGILLE SYNDROME
ColumnsFacing 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…
ALAGILLE SYNDROME
ColumnsNew 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
NewsAlagille 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,…
ALAGILLE SYNDROME
ColumnsPreparing my son with Alagille syndrome, and myself, for surgery
Preparing a child for surgery is scary, as I’m being reminded. My 4-year-old son, Finley, is scheduled to have a small procedure to fix a…
ALAGILLE SYNDROME
ColumnsSometimes I wonder what ‘stable’ means regarding my son’s health
Rare diseases bring a lot of unknowns to the lives of patients, caregivers, and family members. We caregivers often worry about what might be looming…
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