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
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…
ALAGILLE SYNDROME
ColumnsHow 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…
ALAGILLE SYNDROME
NewsIBAT 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)…
ALAGILLE SYNDROME
ColumnsFielding 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…
ALAGILLE SYNDROME
NewsScreening 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…
ALAGILLE SYNDROME
NewsNew 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…
Recent Posts
- Putting out the fires of inflammation in liver disease
- Change is good, but in life with MASH, it’s important to start small
- It turns out that having great friends is good for my health
- With Alagille syndrome, summer fun comes with a summer caution
- Gene therapy shows early promise for fatal childhood liver disease