Struggling with anxiety about a change in routine for my son
Routines are foundational aspects of life with kids. Having a healthy, normal schedule helps the day flow. Kids will always throw a curveball or two,…
Alagille syndrome
My son has Alagille syndrome, but it’s not his defining characteristic
When writing this column, I’ve understandably focused on the various medical complexities, situations, and emotions resulting from my son Finley’s Alagille syndrome diagnosis. I…
Atypical biliary tract abnormalities found in Alagille syndrome baby
A six-month-old baby with Alagille syndrome showed atypical biliary tract abnormalities, including a narrower main bile duct and a gallbladder with a corkscrew-like shape,…
Finding our way to advocacy, and through it, therapy
As someone who tends to be introverted, I saw advocacy as daunting. I had a narrow understanding of how it could look. But after my…
Medical supply ordering can be stressful for an Alagille parent
There are many hurdles that come with rare genetic conditions. One obstacle my family has struggled with recently is that the supplies we need are…
Researchers develop new way to recognize Alagille-causing mutations
A team of researchers has developed a new screening system to identify previously unrecognized mutations as the likely cause of Alagille syndrome. In a…
Why I sometimes feel fear of the future for my youngest son
Parenting brings many challenges, but there’s one that’s always front and center for me: keeping my sons safe and secure. As they’re 6 and 3…
EMA committee recommends Iqirvo approval for PBC in Europe
A European Medicines Agency (EMA) committee has recommended the approval of Ipsen‘s Iqirvo (elafibranor) as a second-line therapy for adults with primary biliary…
The latest obstacles we faced in getting my son’s blood drawn
After my wife, Dani, and I entered the world of Alagille syndrome and became advocates, we aimed to provide a view of everyday life…
Dupilumab works as itching treatment in Alagille case: Report
The use of dupilumab, an approved anti-inflammatory antibody-based treatment, worked to ease itching, known medically as pruritus, in a young woman with Alagille syndrome…
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