OC Support UK^TM

Dr Peter Dixon, a member of the Maternal & Fetal Disease Group at Imperial College, took part in the Great London Swim on 3 July 2010. He swam a mile in the Royal Victoria Dock to raise money for OC research. You can read more about it at http://www.justgiving.com/PeteRiverMile, where you can also (still!) sponsor his swim.  The total raised so far is £2370.14 (including gift aid).

We have more pictures on the Fundraising page, but here's a short video showing the start of the swim and Pete's reactions at the finish:

When I was first diagnosed with OC there was very little known about it in this country.  There were no helplines, no websites (no Internet!), nothing in the medical textbooks and no baby magazine or pregnancy book featured it.

DNA

Today things have improved. Internet searches will yield many references to the condition, obstetric books are beginning to mention it and the media are at last realising that OC is something that women need to know about.

Rosalind Franklin – co-discoverer of DNA's structure

I believe this is due in large part to the many women and families who have donated samples and provided data for research into the condition. Their generosity has enabled research to take place. Scientific papers have been published as a result and this in turn has resulted in groups such as Professor Williamson’s Maternal & Fetal Disease Group at Imperial College, London being able to obtain additional funding. The group is also indebted to all the clinicians and midwives around the country who have helped to collect these samples and provide data.

Placenta

To maintain this momentum more samples are still needed and this is where we need you. You can do as much or as little as you want, from completing questionnaires through to donating blood samples and post-delivery placental samples. Full ethical permission has been given for this study to take place.

Structure of cholic acid – a primary bile acid

If you think you would like to know more about what it all involves just email me: jennychambersoc@aol.com. You need to be over 18 and either have OC or have had a diagnosis of OC in the past. Your samples will make a difference, helping researchers add to existing knowledge of the condition; knowledge that has only come about because of the generosity of previous OC families. Please do think about it.

Dr Victoria Geenes and Professor Catherine Williamson from The Maternal & Fetal Disease Group at Imperial College, London (Hammersmith Campus) have recently been awarded a grant from Wellbeing of Women (on behalf of Sands) to study the effect of severe OC on pregnancy outcomes. The study will use the UK Obstetric Surveillance System (UKOSS) to identify women from across the UK with OC who have bile acid levels greater than 40 micromol/L.

The researchers plan to investigate not only the number of women in the UK who have severe OC, but also whether these pregnancies are associated with an increased risk of fetal complications. They have chosen to define severe OC as a bile acid level of greater than 40 micromol/L at any point in the pregnancy, as this is the level of bile acids which Anna Glantz showed increased the risk of complications for the unborn baby in her study of OC pregnancies in Sweden (Glantz et al., 2004). The Swedish study is different from the new UK study because Dr Glantz and colleagues measured fasting blood samples whereas most UK women do not fast before they give blood samples in the antenatal clinic. This is important because the bile acid level in the blood increases after eating. Therefore there may be a different level of bile acids associated with risk for the unborn baby in UK cases.

It is hoped that this study will show whether there is a level of bile acids in women in the UK above which the risk to the unborn baby increases, and will inform clinicians how best to manage women in this situation. The study is planned to begin early in summer 2010.

We need your help with a couple of important projects.

Jenny wants to reinstate the helpline but to do so she will need funding and a small band of volunteers to train as helpline befrienders.  She has already received a donation of £200 to get things under way but can you help her to implement the helpline in time for the spring of 2010? Click here to find out more about how you could support her endeavours.

 (3D scan by kind permission of Emily Guiver and baby Ben)

• Read More

In addition to our regular forum, where you can chat to others about your experience of OC, we have now added a special forum, called Precious Memories, for those of you who have been affected by the death of an OC baby.  Thankfully stillbirth because of OC is quite rare these days, but we felt that it was important to have somewhere to provide support for bereaved parents, other family members and friends.   You can join this group by clicking here.

Most of the funds we raise goes directly to research into OC at Imperial College, London.  However, as many of you know, I have operated both the Helpline and the website on a voluntary basis and I have been lucky to have the odd donation over the years to help towards running costs.  If you would like to support this work and  projects like the re-introduction of the Helpline, you can do so by a variety of ways that are mentioned below.  If you have any questions about this please do contact me - otherwise please  support us! I will up date the site with how well we are doing on a regular basis.

• Use easysearch every time you search the Web and they'll give 50% of the fees paid by their advertising sponsors to OC Support UK.

• You can also raise funds by shopping online using easyfundraising.org. You'll need to register on your first visit.
• For every old mobile phone, empty inkjet cartridge (not Epson) or laser or toner cartridge we send to Recycle4charity, they will make a donation to us. The donation will vary, with some mobiles raising as much as £30, inkjet cartridges £1 each and laser and toner cartridges up to £5.

• Read More About Recycling