A 34-year-old woman with Alagille syndrome and vascular problems — who had been implanted with a stent for her narrowed pulmonary arteries — experienced…
Alagille syndrome
ALAGILLE SYNDROME
ColumnsCelebrating my son’s growth with Alagille syndrome
My son Finley was recently invited to a birthday party for one of his best friends. He was so excited that he talked about it…
ALAGILLE SYNDROME
ColumnsTaking vitamins is a challenging change of routine
Routine is a huge part of the daily life of raising kids. They make the day go more smoothly, helping everyone know what to expect.
ALAGILLE SYNDROME
NewsLivmarli approved in Japan as itching treatment for Alagille, PFIC
Livmarli (maralixibat) has been approved in Japan for the treatment of itching in people with Alagille syndrome and progressive familial intrahepatic cholestasis (PFIC),…
ALAGILLE SYNDROME
ColumnsGiving ourselves grace amid a hectic schedule and missed appointments
I wish raising children would come with a checklist. Every day there are so many items to check off in addition to work and staying…
ALAGILLE SYNDROME
ColumnsWhy community is important for parents of children with Alagille
I normally reserve this column for sharing stories about my son Finley, who was born with Alagille syndrome in 2021. Obviously, he deserves the…
ALAGILLE SYNDROME
NewsMore collaborative Alagille research is needed, review study says
More collaborative research is needed to better understand Alagille syndrome and to help overcome challenges related to diagnosing and treating it, according to a…
ALAGILLE SYNDROME
ColumnsWhile treatment has helped my son, the itch never entirely fades
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
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…
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