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…
Alagille syndrome
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…
Screening for skull deformities necessary in some Alagille patients
Alagille syndrome may cause problems with skull development that can put abnormal pressure on the brain, and screening babies at risk for these rare…
New app designed to be health record, journal for patients
Know Rare, a support platform for people living with rare diseases such as Alagille syndrome, launched a health journaling app to help patients…
Everyday vigilance is part of raising a child with Alagille syndrome
I’m fortunate that my son Finley, who was born with Alagille syndrome, has had relatively good health since his diagnosis and subsequent treatment. The…
