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…
Columns
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…
Our daughter’s PFIC diagnosis made us rethink drinking at Christmas
I love Christmas. What’s not to like about being with friends and family, taking winter walks, and eating too much food? My dad’s always been…
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…
Our son with Alagille syndrome is finding it hard to fall asleep
Raising young children entails a variety of obstacles. For me, one of the most challenging is sleep regression, a temporary decline of a child’s sleep.
Doing our part to hasten a cure for our daughter’s PFIC3
A few years ago I received an unexpected phone call from Birmingham Children’s Hospital here in England. Action Medical Research, a British charity working to…
How we navigate our son’s response to cold and flu season
Nearly all parents know that their little kids are walking germ factories. Having our boys in day care and elementary school creates all kinds of…
How we’re navigating day-to-day life with a liver disease
Raising children means daily challenges. One day they’re the sweetest kids in the world; the next, you wonder how someone so small could bring forth…
Medical play specialists saved the day for our daughter
We had a breakthrough this week with our 4-year-old daughter, Eva, who has progressive familial intrahepatic cholestasis (PFIC). I think we’ve finally found the…
It’s hard explaining my son’s Alagille syndrome diagnosis to strangers
Before my son Finley was born, I had minimal exposure to the rare disease world. I knew about the more publicized conditions and had participated…
Recent Posts
- How I’m learning to cope with challenges as a rare disease parent
- IBAT inhibitors have potential to boost life quality for patients
- Trial of HBV treatment candidate now enrolling final patient group
- Cour’s CNP-104 granted FDA orphan drug status for treating PBC
- Maralixibat Phase 3 trial for cholestasis-related itch is enrolling