With the end of summer nearly upon us here in the Pacific Northwest, we’re already feeling the shift in seasons. The new school year is…
Alagille syndrome
ALAGILLE SYNDROME
ColumnsKeeping up with medical appointments, even when my son is stable
As my summer in the Pacific Northwest comes to a close, I’m reflecting on everything I’ve done. Time has flown by so quickly; when raising…
ALAGILLE SYNDROME
ColumnsWith Alagille syndrome, summer fun comes with a summer caution
My sons Jackson and Finley love the summer, when their schedules ease up. They spend their days adventuring in the neighborhood and splashing around in…
ALAGILLE SYNDROME
ColumnsA Q&A with med students helps to keep the ‘patient’ in patient care
One thing that’s important to me as a parent raising a child with a rare genetic condition is to be able to help share the…
ALAGILLE SYNDROME
NewsHeart risks in Alagille syndrome may go beyond artery narrowing
Children hospitalized with Alagille syndrome commonly had narrowing in the branches of the pulmonary artery, which carries blood from the heart to the lungs,…
When you have a child with a rare genetic condition, you realize quickly that there’s no blueprint for raising their siblings. When my son Finley…
ALAGILLE SYNDROME
ColumnsA ‘graduation’ photo prompts reflection on a family’s Alagille journey
I’ve found myself reflecting a lot recently as my two boys close their current chapters in life and head into new ones. Part of what…
ALAGILLE SYNDROME
NewsNew lab-grown cells may improve Alagille syndrome variant testing
A new type of genetically engineered lab-grown cell may help researchers determine whether certain genetic variants can contribute to Alagille syndrome, a study reports.
ALAGILLE SYNDROME
ColumnsI don’t want my son’s small size to keep him from doing what he enjoys
As a dad, I enjoy seeing my sons figure out what interests them. I have two boys — Jackson, 8, and Finley, 5 — and…
ALAGILLE SYNDROME
NewsLivmarli helps clear fatty skin growths in Alagille kids, study finds
Treatment with Livmarli (maralixibat) can reduce cholesterol levels and help clear fatty skin growths called xanthomas in children with Alagille syndrome, according to…
Recent Posts
- If you’re going to be in the hospital, here’s some things to keep in mind
- Back-to-school shopping is complicated by Alagille syndrome
- When liver disease complicates physical intimacy
- What 5 years of listening taught me about a silent disease
- Keeping up with medical appointments, even when my son is stable