By Lorraine Lally – Patient Advocate

Member of Epilepsy Ireland and the Co-Chair of the IBE Youth Team

Working with patients is at the core of WBP’s work, so let’s try and find a mid-ground!
Epilepsy is a severe neurological disorder which, like many others, affects men and women differently. It is important to understand sex and gender differences, from a scientific as well as a patient-centric perspective, to be able to support people living with epilepsy in the best possible way. 
For this reason, WBP last year has supported a roundtable with leading scientists to talk about sex and gender aspects in epilepsy. 
Maria Teresa LinkedIn post 

It is for the same reason that we are happy today, for international #epilepsyday, to give voice to Lorraine Lally, patient Advocate and Member of Epilepsy Ireland and the Co-Chair of the IBE Youth Team.” Maria Teresa Ferretti

As a Woman with epilepsy and a patient advocate I have had the pleasure of being part of the website. I would like to raise awareness around a special website that I assisted and supported in setting up at  WomenAndEpilepsy.org.
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 the medical practitioners took excellent care of me but I did not transition from the Paediatrics department to the adult department due to journey to third level in a different city.
There was not a focus on the issues that faced me as a woman. I went off the University and was delightful 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 a person with epilepsy is precious. 
A special website for women with epilepsy and I am so proud to see the recognition of the concern and requirement for clear and adequate information. This may seem basic and some people have asked me the reason for a safe and secure website.
 
For 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 foetus 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. Sanofi has had no editorial control over the content of the materials.
We welcome all feedback pease email:  info@ibe-epilepsy.org

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