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…
Alagille syndrome
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,…
Livmarli 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.
My 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…
How I’m learning to cope with challenges as a rare disease parent
Heading into the new year, one thing I’ve chosen to focus on is how I cope with challenges and obstacles in life. The last few…
IBAT inhibitors have potential to boost life quality for patients
Alagille syndrome comes with a high clinical, economic, and quality-of-life burden for patients and their families, but new treatments such as Livmarli (maralixibat)…
Fielding my son’s new questions about his Alagille syndrome
I knew the questions that would come from my son Finley one day. We’ve been slowly teaching him about his Alagille syndrome. At almost…
Recent Posts
- Patient identification guidelines may help diagnose biliary atresia earlier
- Hepatitis B gene-editing therapy PBGENE-HBV shows early promise
- 2nd liver transplant linked to good outcomes in PSC
- AI models may aid intrahepatic cholestasis of pregnancy prediction
- With so many specialists, scheduling appointments can be tricky