When I was little, I was a picky eater. A big fan of peanut butter and jelly, I wasn’t super adventurous and didn’t really eat…
Alagille syndrome
ALAGILLE SYNDROME
ColumnsThis year, my son with Alagille will hit 2 major childhood milestones
It’s challenging for me to look far into the future, as I tend to remain grounded in the present. It’s not that I don’t plan…
ALAGILLE SYNDROME
NewsAlagille syndrome linked to glaucoma risk in study of 2 brothers
Two adult brothers with impaired vision due to glaucoma, a serious eye condition that may lead to irreversible vision loss, were found to have…
ALAGILLE SYNDROME
ColumnsMy son is learning the importance of taking his daily medication
As my kids age, I am teaching them responsibility. We talk about their duties at home, at school, and in public. Some of these come…
ALAGILLE SYNDROME
NewsMedications known as IBATIs are safe, effective in Alagille: Analysis
Livmarli (maralixibat) and Bylvay (odevixibat) not only offer significant relief from severe itching in children with Alagille syndrome, but also improve quality…
ALAGILLE SYNDROME
ColumnsSoaking in the season of joy is extra special this year
Raising kids is tough. Speaking for myself, as someone who often recharges with alone time, having two young boys has been a struggle at times.
ALAGILLE SYNDROME
NewsLivmarli helps ease stubborn itching in Alagille syndrome after surgery
Livmarli (maralixibat) safely eased severe, treatment-resistant itching in two girls with Alagille syndrome who previously underwent surgical biliary diversion (SBD), a procedure that…
ALAGILLE SYNDROME
ColumnsAn easy transition to new vitamins is a breakthrough for my son
Our son Finley is a strong-willed and determined little guy. As he approaches his fifth birthday, he’s not shy about sharing his opinions. If he…
ALAGILLE SYNDROME
ColumnsParents and son are all on a path of discovery with Alagille syndrome
Our son Finley was born with Alagille syndrome in 2021. Since then, I’ve been on a journey to learn about his rare disease and…
ALAGILLE SYNDROME
ColumnsA boys’ day out brings a welcome sense of normalcy
When I brainstorm column topics, I often find that I lean into the stress and anxiety that come from raising a child with a rare…
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