Allison went along to the Epilepsy Specialist Nurse Association Annual conference in Manchester to meet with 80 ESN’s from around the UK, to find out what they knew about r(20) and see if they had any patients in their care. It was quite a mixed bag in terms of those who had and had not heard of r(20).
All delegates were provided with our signs and symptoms list and r(20) leaflet about the support group in their delegate packs and I took time to chat to them about sharing this information with the colleagues. It was a privilege to hear Prof Sanjay Sisodiya speak about genetics and epilepsy and how understanding more about genetics causes will help to treat patients better in the future. There were also interesting presentations on women and childbearing with epilepsy and also driving regulations for those who have seizures.
One of the key reasons for attending was to promote our r(20) Activists campaign, so I gave out lots of our posters which should be appearing in an epilepsy clinic near you soon! However, there will be areas of the UK that I missed, or weren’t represented at the conference, so please do try and take some posters along to your local hospital/clinic when you next attend for a routine appointment and help spread the word.