How it all started

"I knew there was something wrong when I was pregnant even though I had been told that there wasn’t.  

However, it still came as a big shock to me when I was eventually diagnosed with Obstetric Cholestasis (OC). My journey into motherhood had not been without its complications and heartache. So to discover that these difficulties had been because of a liver condition that I’d never heard of, took a little while to get my head around.

This was in 1991, when there was very little in UK medical text books about OC. There was nothing in any baby magazines and certainly no research being conducted. I felt very isolated. I wanted to do something to raise awareness of the condition for all the other women who were still being told, like myself, that itching in pregnancy is normal and does not need attention. Of course, itching can be normal but it is also the presenting symptom of OC.

 It wasn’t easy in those early days. Even if clinicians knew about OC, many of them still regarded it as ‘benign’ and were still advising women that it was ‘nothing to worry about’. It was important to me to give women the most up to date information possible about the disease so that they could go on to share it with the health professionals caring for them.

I began by setting up the Helpline and lobbying baby magazines to feature the condition. Gradually women began contacting me. I badgered my new consultants, Judith Weaver and Professor Elwyn Elias, to start a research group based in Birmingham. Both Judith and Elwyn were hugely supportive of what I was trying to achieve and I will always value their encouragement during those early days.

In 1997 I met Dr Catherine Williamson who runs a research group that works on OC at Imperial College London. By this time I was driven to understand the causes of the condition and was keen to help with the research. Dr Williamson obtained ethical approval for me to help with recruitment for the research through the Support Group, and I am delighted to have been able to generate considerable interest in the study from women with OC. The team at Imperial College has now raised money to pay me for my efforts and I am proud to be working as part of the research group. As I am also a trained counsellor, I hope to expand my involvement in research by focusing on the psychological needs of women with high-risk pregnancies. I am indebted to Dr Williamson for her support and guidance over the past years.

If taking part in the research is something that you would like to do click here to find out more about what is involved.

The information on this website is owned by me and is a guide for you rather than a 'this is how it must be’ approach. In fact your own consultant may not agree with some of the content and I think this is really healthy as it encourages debate and thought. I am not a doctor and definitely not an expert on the condition although I do have a robust comprehension of the disease and its complexities. I believe it is vital that women are able to talk to those caring for them in their OC pregnancy and hear alternative views about the condition. My aim has always been to encourage clinicians to communicate with each other about the condition so that knowledge may be expanded and collaboration encouraged. More importantly, it is about asking heath professionals to listen to women who have OC and to recognise that, like many other diseases, it is the person who has the condition that has a ‘feel’ for it; that they are an important part of any treatment decision making that has to be done.

I hope you find this website useful. It is something that I have always wanted to do but kept putting off because of other commitments. I am extremely grateful therefore to Dr. Edu Dorland and Victoria Geenes who have carried out the lion's share of the work needed to put the website together. It’s still work in progress and will be developed as time goes on so please do feedback to me any comments you may have about it.

It would be impossible to individually name and thank everyone who has supported me over the past fifteen years; there have been so many wonderful people who have been there for me. So I will simply say to the women who have contacted the helpline, to friends, family and work colleagues: “thank you”. Your support and encouragement over the years has helped to keep me going especially when I felt like giving it all up.

Finally, I would like to acknowledge my children, Victoria, Olivia, Alexander & Timothy. Victoria & Olivia, my memories of you will always be tinged with a quiet sorrow but I treasure the moments I had with you both. Alex, you gave me a reason to get out of bed in the mornings when life seemed pointless. Tim, you gave me back the ability to marvel at the wonder of life and the joys it can bring. I love you all very much".

Jenny Chambers, September 2006.