New campaign provides support for pregnant women with epilepsy
Epilepsy Action has launched a new campaign, HealthE mum-to-be, to improve the care, support and advice given to pregnant women with epilepsy.
All pregnancies in women with epilepsy are classed as high risk. Around 2,400 babies are born to women with epilepsy each year. Women with epilepsy and their unborn babies potentially face an increased risk of problems during pregnancy and birth. This is due to changing seizure patterns and taking certain epilepsy medicines. In extreme cases, babies can be born with a malformation or the lives of mothers and babies can be put at risk. With better information, care and treatment before and during pregnancy, it is possible to minimise the risks for more women with epilepsy. Epilepsy Action has launched a new campaign to provide this information to women with epilepsy and their health professionals.
As part of the HealthE mum-to-be campaign, Epilepsy Action has launched a series of new and updated resources to support health professionals and women with epilepsy through pregnancy. The charity has updated its Epilepsy in pregnancy: resource pack for obstetrics professionals for midwives and obstetricians. The pack helps health professionals learn more about epilepsy and ensure women with epilepsy get the support and advice they need during pregnancy. It includes updated resources that link to national guidelines for caring for mums-to-be with epilepsy. Health professionals will be encouraged to share this information with their patients.
Epilepsy Action has also developed a new magazine for mums-to-be to make sure they are aware of the issues that may affect their pregnancy. The Pregnancy Diaries features the stories of six mums with epilepsy. It charts the progress of their pregnancies and how they dealt with their epilepsy. The new magazine will also be sent to medical professionals across the UK, along with the resource pack, to highlight the issues women with epilepsy face during their pregnancies.
The new and updated resources coincide with the release of the results of an Epilepsy Action survey of almost 500 women with epilepsy. The survey reveals that over a quarter (26 per cent 53/204) of respondents who have been pregnant in the last five years or are planning on becoming pregnant, said a health professional had not discussed epilepsy and pregnancy with them. This is despite national guidelines, which state that pre-conception counselling should be given to women with epilepsy. This means that many women are never made aware of the risks associated with epilepsy and being pregnant.
One of the Pregnancy Diaries writers is Clair Cobbold, 28, from Surrey. Clair was diagnosed with epilepsy when she was 19 and had her first child, Riley, in June. Clair said: “When I found out I was pregnant, I was worried about how my seizures and anti-epileptic medication might affect my baby. But regular scans revealed my baby was fine and throughout my pregnancy, my epilepsy specialist worked with the maternity team to monitor me closely and put a detailed plan in place for labour. I found thinking about having a baby, pregnancy, labour and looking after a baby when you have epilepsy all very daunting. The most important things for me were health professionals understanding these concerns and hearing other mum's experiences, knowing you are not alone. That’s why I’m supporting Epilepsy Action’s campaign.”
Nicole Crosby-McKenna, women’s officer at Epilepsy Action, said: “The majority of women with epilepsy enjoy healthy pregnancies and give birth to healthy babies. But it is vital that women with epilepsy are given information about all aspects of pregnancy and epilepsy. This information should be given as early as possible, and ideally before they become pregnant. Women should be encouraged to work together with health professionals so that their care before, during and after pregnancy can be properly managed. This will help reduce the risk of increased seizures, maternal death and malformations in babies born to women with epilepsy.”
To order a free campaign pack, including an updated copy of Epilepsy in pregnancy: resource pack for obstetrics professionals, and information about all aspects of epilepsy and pregnancy, visit www.epilepsy.org.uk/womenscampaigns
A few links to where the campaign has been in the press:
(there a couple of issues with this one, but its still a valuable piece for us – for example, we obviously don’t say ‘epileptic’ ourselves, but explaining this to journalists is a bit of a losing battle.)
Hello,
ReplyDeleteMy name is Pam and I have had Epilepsy since 7 years of age , I have lived my entire young life having what at that time was called Gran Mal Seizures , really bad seizures, the Doctor I was seeing didn't know that the medication I was on had a side affect and I had a reaction where my thyroid was so over active it bulged out beyond my chin in one day as a result I take synthroid as my thyroid is there but doesn't work .
I also have 2 wonderful handsome son's now 35 yrs old and 38 yrs old they are my rock and loves of my life , my seizures have been under control for a very long time now and i consider myself as normal as anyone else , yes I can drive , and I work for the airlines and have for many years we travel all over the place we especially like Europe.
I was on a medication for 53yrs and they took it off the market Jan 2012 and i was not aware of this , so my doctor an i have had a challenging time getting me on an alternate drug that will work and glad to say throughout this entire ordeal we finally got the formula down pat , but I would have never thought at my age I would have to start all over again ,but it is what it is life goes on and so do I. I hope you read this and see that there are so many people affected by this disorder and think it is a bad thing with the "OH my god what do I have" or the stigma it puts on people with Epilepsy.
It's a disorder nothing more nothing less we need to accept it and embrace it as we never out grow it , I love who I'm , what I have become and what I have accomplished in my life, with Epilepsy.
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