This month’s Epilepsy Star award is awarded to Rhiannon Scott, from Belfast, for starting an epilepsy support group for pregnant women. Rhiannon was nominated by Gemma Bramhill who attends the group and says Rhiannon has created a safe space for the mums to be to share their anxieties and has been a massive source of support.
Before finding the group, Gemma felt very lonely and isolated. Since joining, Gemma says the group has made a huge difference.
“I’ve lived with epilepsy for four years. I’m currently 36 weeks pregnant and my epilepsy is still very active with tonic-clonic and focal seizures. Deciding to have a baby was a massive decision for myself and was a very hard one to make – am I selfish for wanting to try whilst my epilepsy isn’t stable? What kind of mother would I be? Was it going to be safe enough for the baby during and after pregnancy?
“I worked closely with my epilepsy specialist and got to a place where my tonic-clonic seizures were stable, but I was still regularly having focal seizures. During my pregnancy, my tonic-clonic seizures have returned but haven’t caused any harm to myself or the baby. I’ve had to have lots of medication increases throughout to try and keep us both safe. It’s a very scary journey and one that can feel very lonely when you don’t know other people in the same situation.
“I have found that there is a lot of information about pregnancy and epilepsy separately, but nothing about the combination of the two.
“I have a lot of friends who have children, who could give me advice, and they’ve been very supportive. But I felt I was missing that support from others who are in the same situation as me. I began to feel very lonely and isolated.
“I first met Rhiannon through an Epilepsy Action Women’s support group. She asked me if there was anyone who would be interested in joining a support group specifically for epilepsy and pregnancy. I was overjoyed as this was exactly what I was looking for.
“Rhiannon also has epilepsy and is pregnant with her first child. She was feeling very similar to me and decided she wanted to fill that void. She started the epilepsy and pregnancy support group through Epilepsy Action’s Independent Groups Network. The group meets virtually every 2 weeks and has had four sessions far.
“Rhiannon runs the group independently as well as having a full-time job, epilepsy and being pregnant.
“So far, there are eight of us who attend the group and it has made a massive difference to us all. It’s become a safe space to share any anxieties, our journeys and safety tips. The group has a range of participants from pre-conception through to postpartum.
“To any mums or mums to be thinking of joining a group, I’d say go for it! Connecting with others who are in a similar situation really helps you feel less isolated, and sharing your experiences and information can help others too.
“Rhiannon has put a lot of effort into starting this group and is very open to feedback about how people want to sessions to run and topics of conversation. She is very passionate about ensuring there is somewhere we can all come together and feel seen and heard.
“I want to say a massive thank you to Rhiannon for all her hard work and dedication in getting this group started and the huge difference it has made to me and others. It really has helped me feel less alone during what is a very scary time. I’m looking forward to still attending the group after my baby is born and sharing the rollercoaster ride of parenthood!
“Thank you, Rhiannon – you really are a star!”
Upon accepting her award, Rhiannon said: “Thank you to Gemma for nominating me! I was not expecting to have received such a positive outcome so early in the process.
“I’m currently 31 weeks pregnant, and something I’ve found is a lack of support available.
“Speaking to Gemma during my pregnancy journey has been an utter blessing and I am so thankful to have met Gemma to share my experience with. This shows how essential the support group is and that more attention is needed towards epilepsy and pregnancy.
“There is so much more to think about as a mum to be with epilepsy. A lack of sleep is a huge trigger for my seizures, adaptions around the house for baby safety like accompanied bathing or feeding on the floor to lower the risk of falling, and limitations for childcare and school due to not being able to drive.
“I searched for online and in-person epilepsy pregnancy groups around the UK and found the topic to be non-existent. I sat there wondering how other women with epilepsy managed their pregnancy and postpartum journeys alone, so I felt impelled to start a virtual group.
“Discussions in the group sessions include our fears and concerns during pre-conception, pregnancy & postpartum. We also often discuss our partners and the impact this also has on them during the journey.
“Daily adaptions are discussed for managing baby safety as a person with epilepsy, side effects of medication changes during pregnancy and changes in seizure activity during pregnancy & postpartum. Everyone’s journey is different, yet it is wonderful to be able to connect with people who all have similar fears and concerns, reminding us we are not alone!”
“I’d also like to thank Will from the Epilepsy Action team for helping me set up this group through the Independent Groups Network. I look forward to continuing to work within the epilepsy community during their pregnancy journeys.”
Rebekah Smith, chief executive at Epilepsy Action, said: “We’re delighted to give this month’s Epilepsy Star award to Rhiannon for the incredible hard work she has put into her support group for mums and mums-to-be with epilepsy. We’re so inspired by her ability to balance living with epilepsy, pregnancy, work and everyday life while running a group that has had such a positive impact on so many women’s lives.
“Pregnancy isn’t an easy journey for any woman, but living with epilepsy can bring additional challenges. Having the right support around you can make all the difference during this time, highlighting why groups like Rhiannon’s are so important.
“Epilepsy Action’s Independent Groups Network is a service the charity launched last year to help us reach more people living with epilepsy who need support. It’s fantastic to see individuals like Rhiannon working so closely with our teams to create groups in areas where there may have previously been gaps in support.
“It’s wonderful to see how Rhiannon and Gemma were brought together through both motherhood and their shared experience of epilepsy. A huge congratulations to Rhiannon for this well-deserved recognition, and we look forward to seeing how the group continues to grow.”
