Why 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
More 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…
While 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,…
6 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…
The 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…
With 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…
Poor 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…
Livmarli, 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…
My 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…
My 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,…
