Why making time for doctor appointments is challenging
For me, one of the most dreaded parts of being the parent of a child with a rare genetic disorder is getting lab work done.
Alagille syndrome is a genetic disease that can cause a wide range of symptoms, typically including liver problems as well as heart issues and characteristic changes in the shape of the face.
Read moreA range of treatment options, including medications and surgical procedures, are available for managing Alagille syndrome symptoms and improving quality of life for patients
Read moreFor me, one of the most dreaded parts of being the parent of a child with a rare genetic disorder is getting lab work done.
Daily treatment with Bylvay (odevixibat) safely and effectively eases itching and lowers blood bile acid levels, a sign of liver damage, in children and adolescents…
One thing I aim to do by writing this column is to bring some focus to what life looks like when raising a child…