If you spend enough time around something, you’ll start to notice it less and less. But that’s not always the case with our 4-year-old son,…
Alagille syndrome
ALAGILLE SYNDROME
News6 JAG1, NOTCH2 gene mutations ID’d as likely cause of Alagille
Researchers in China have identified six new mutations in the JAG1 and NOTCH2 genes as likely causes of Alagille syndrome. In…
ALAGILLE SYNDROME
ColumnsThe value of the yearly pediatrician appointment
For our family, the early months of the year are the season to visit the pediatrician. With both of my boys born in this period…
ALAGILLE SYNDROME
ColumnsWith so many specialists, scheduling appointments can be tricky
Tedious background music drones on repeat. Or worse, a repetitive voice recording reminds you that the lines are full and your call is important. For…
ALAGILLE SYNDROME
NewsPoor access to genetic testing may delay Alagille syndrome diagnosis
Difficulty accessing genetic testing in low- to middle-income countries may delay the diagnosis of Alagille syndrome in children and lead to misdiagnoses that may…
CHOLESTASIS
NewsLivmarli, Bylvay safely reduce pruritus in PFIC, Alagille children
Livmarli (maralixibat) and Bylvay (odevixibat) can help relieve itching, or pruritus, and reduce liver damage in children with progressive familial intrahepatic cholestasis (PFIC) or…
ALAGILLE SYNDROME
ColumnsMy son with liver disease will once again need to take vitamins
There are many aspects of my son Finley’s journey with Alagille syndrome that I wish would stay in the past. One that stands out…
ALAGILLE SYNDROME
ColumnsMy son’s fourth birthday is yet another milestone to celebrate
Last year, I wrote about celebrating my son Finley’s third birthday. I shared about that day to show that, although Finley has Alagille syndrome,…
ALAGILLE SYNDROME
NewsLivmarli relieves itch in adolescents with Alagille syndrome: Analysis
Treatment with Livmarli (maralixibat) is effective for relieving itch in adolescents with Alagille syndrome, according to a new analysis of previous clinical trials.
ALAGILLE SYNDROME
ColumnsMy son understands more about his Alagille doctor appointments
Every six months, we see our gastrointestinal (GI) team at the children’s hospital. We’re fortunate to have continued to see the same two providers we…
Recent Posts
- Think smoking only affects your lungs? Your liver would like a word.
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- This year, my son with Alagille will hit 2 major childhood milestones
- Madrigal acquires ervogastat to help boost MASH treatment options
- Alagille syndrome linked to glaucoma risk in study of 2 brothers