A new charity – OC Support – launches on 29 March 2012 to help women and their families affected by the pregnancy liver condition obstetric cholestasis (OC), to raise awareness of the condition and to support further research into its causes.

OC is the most common pregnancy-specific liver disease and affects 1 in 140 pregnant women in the UK and can lead to complications and risks including spontaneous premature birth, fetal distress and stillbirth. The charity hopes that by raising awareness of the symptoms to look out for (see below) and funding more research into the condition, these risks can be drastically reduced.

The charity runs a helpline and a website, has made a short film about the condition, moderates forums for affected women and their families to share experiences and ask questions, and raises money towards research into the condition.

Jenny Chambers set up the charity after undertaking 20 years of fundraising and campaigning work about the condition, following her own tragic loss of two babies as a result of undiagnosed OC. Jenny said: “Becoming a charity is such an important move which will enable us to support more women and their families, raise more money to fund crucial research into the condition and work strategically with partner organisations to improve awareness. We want to make a real difference in peoples’ lives and ultimately we hope to eliminate stillbirths resulting from OC, so that no more families need to go through the agony of losing a baby to the condition.

“Twenty years ago there was nothing about OC in media or pregnancy books. I felt very strongly that women needed to know about the condition and understand its implications, and this remains the case today. With active management the risk of stillbirth in an OC pregnancy is believed to be the same as for any normal pregnancy, which is why continuing to raise awareness and fund research into the condition is so important, and becoming a charity facilitates this.”

Professor Catherine Williamson, head of the Maternal and Fetal Disease Group at Imperial College which is studying the causes of OC and what the best treatments are, said: “I believe the emergence of this charity is very timely. OC is a common liver disease of pregnancy that can have severe consequences in terms of adverse pregnancy outcomes. There is increasing interest in OC throughout the medical and scientific community and several recent studies have focussed on the causes of the complications of stillbirth, preterm labour and features of fetal distress. Researchers are keen to work with patient organisations to take our findings to affected women and babies in the clinic and in the community. I have worked with Jenny Chambers and other members of OCSupport for several years and cannot imagine a more effective and professional group of people to run the charity. I look forward to working with the charity to help improve management of women with OC and to understand this important disease.”

Former Eastenders actress and singer Kim Medcalf, patron of OC Support who had OC in her first pregnancy and who is currently pregnant with her second child said: “Pregnancy can be a worrying time even if it runs smoothly, but having OC can cause unbearable itchiness for the pregnant woman and a lot of extra distress and concern for her and her family. The help that OC Support can provide for affected families is very reassuring and it is also comforting to know that so much important research is being carried out so that diagnosis, care and treatment can be improved in the future.”

Obstetric cholestasis (also known as intrahepatic cholestasis of pregnancy, ICP) is a pregnancy liver disorder that usually (but not always) appears in the third trimester of pregnancy and affects around 5,000 women in the UK each year. It causes a build up of bile acids in the bloodstream, potentially leading to complications and risks including spontaneous premature birth, fetal distress and stillbirth. Symptoms include:

• itching that is typically on the hands and feet but which can be anywhere on the body. It may be mild and annoying or so severe and debilitating that it disturbs sleep and causes the woman to scratch so aggressively that she bleed;
• dark urine;
• pale stools;
• and some women also bleed heavily after delivery.

Diagnosis is through blood tests and whilst there is no cure, management of the condition usually comprises monitoring and medication during pregnancy followed by early induction (typically between weeks 37 and 38). Symptoms disappear very soon after birth but there is a 60-90% chance that once affected, women will develop OC again in future pregnancies.

For more information visit www.ocsupport.org