As a woman with epilepsy, and a patient advocate, I have had the pleasure of being part of the website WomenAndEpilepsy.org. I would like to raise awareness around this special website. I was a premature baby that arrived 2 months early much to horror and disbelief of my parents. This is part of the reason that I was inspired to get involved as a patient advocate. My epilepsy was not obvious when I was born because there was a lot of focus on other medical issues. As a child being diagnosed with epilepsy, the consultant showed me the EEG and then the MRI Scan showing the defects in the structure of my brain. As a child the electrical storm in my brain was a frightening reality.
There was not a focus on the issues that faced me as a woman. I went off the University and was unaware of the issues facing me around contraception and the risks to an unborn child of certain medications. For International Women’s Day, there is a desire this year to break down bias. I feel no shame as a woman in discussing my rights to have control over my body. Control, to me, is precious.
I am so proud to see the recognition of the concern and requirement for clear and adequate information on WomenAndEpilepsy.org.
The website helps you find answers to questions such as:
• Why is epilepsy different for women?
• What are hormones and how do they affect epilepsy?
• How does puberty affect epilepsy?
• Will epilepsy affect my sex life?
• Epilepsy and contraception
• Epilepsy and valproate
• Accidental or unplanned pregnancy
• What you need to know to have the healthiest pregnancy possible
• Risks to the fetus of an unmanaged pregnancy in a woman with epilepsy
• Questions for your doctor
We have done active work to include all women.
For me I am not even thinking about it- Even if you don’t plan to get pregnant any time soon, there are things that it’s vital to understand.
For my friend Claire who is planning and thinking about having a baby- As a woman with epilepsy, you need to plan well ahead of any potential pregnancy, so that you can have a healthy pregnancy.
For my friend Emma, who is pregnant! – Being pregnant is a time of wonder but, if you have epilepsy, you will need to be mindful of certain issues.
For my friend Anna,who is already a mother- This is an exciting time for new parents. But it is also a time full of questions and, often, worries.
There is also a section for medical professionals. WomenAndEpilepsy.org has been developed by the International Bureau for Epilepsy (ibe-epilepsy.org) as part of its Epilepsy & Pregnancy Project. The campaign has been developed with financial support from Sanofi.
We welcome all feedback please email info@ibe-epilepsy.org for more information.
