My daughter’s PFIC reminds me why organ donation is important
This year, the U.K.’s National Health Service is marking the 30th anniversary of the establishment of its Organ Donor Register, which was founded to…
Itching & Scratching – a Column by Sophie Bourton
Creating memories during our daughter’s annual trip to a specialist
It’s been a special week in our household as our daughter, Eva, started preschool. We were brimming with pride as she held her new teacher’s…
Testing, testing, testing for a healthy child
After our daughter Eva was diagnosed with the liver disease progressive familial intrahepatic cholestasis (PFIC), we chose in vitro fertilization (IVF) with preimplantation genetic…
Our journey to having a healthy child with IVF
Alongside our daughter Eva’s diagnosis of progressive familial intrahepatic cholestasis (PFIC), we learned that our future children would have a 25% chance of having…
Navigating the unknowns after a diagnosis of PFIC
One difficult thing about a rare disease is that there are so many unknowns, and it’s not always obvious where the answers can be found.
Itching and scratching our way to a PFIC diagnosis
My childhood neighbor was a university lecturer. One of my earlier memories of her is when she told me, “Sophie, you aren’t nosy. You’re inquisitive,…
