Why research is so important

When I was diagnosed with intrahepatic cholestasis of pregnancy in 1991, there was nothing written about management of the condition in any institutional guidelines and most health professionals had not heard of it. It was sheer luck (although, following two stillbirths, I didn't feel quite so lucky at the time) that I was finally diagnosed by an obstetrician who had an interest in the condition and who worked with a hepatologist with an interest in intrahepatic cholestasis of pregnancy. Both were keen to conduct research into the disease, so during my final pregnancy I agreed to donate the samples they wanted as well as taking a new medication for the condition.

Intrahepatic cholestasis of pregnancy is the most common pregnancy-specific liver disease affecting around 5500 women a year in the UK (0.7%) (Abedin et al, 1999). There is a geographical spread to incidence of the condition; women whose family birth origins are South American, South Asian and Scandinavian are more likely to be affected (Ovadia and Williamson, 2016). Intrahepatic cholestasis of pregnancy is caused through a combination of genetics, hormones and environmental factors. Its main symptom, pruritus, can be so distressing for women that some have reported feeling suicidal (Chambers, 2021). Other symptoms include dark urine, steatorrhea and right upper quadrant pain (ICP Support, 2022). It is associated with fetal distress, spontaneous premature birth and, in severe cases, stillbirth (Ovadia et al, 2019). Diagnosis is made through liver bloods tests and more specifically, non-fasting bile acid tests.