After struggling with my epilepsy for years I decided that more awareness and support was needed. In June 2015 I set up 'Epilepsy Positivity' Instagram and Twitter accounts with the support of my friend Beth. The Instagram is now the largest epilepsy related account on IG with over 20,000 followers. I have connected with so many incredible people through it and I get touching messages everyday from people saying how the accounts (particularly the Instagram) and the online community that has been created keeps them going by allowing them to share their experiences, receive advice and feel less alone. It has also encouraged people to come forward and seek the support that they deserve.
After my daughter's diagnosis last year this account has been a huge help for understanding epilepsy and connecting with others. The coordinator is helpful and has shared my questions on the Instagram page where I have received over 100 responses. I have also met other Mums in similar situations thanks to this community - it has been a lifeline!
I’m a Patient Leader