My name is Rhiannon. I was diagnosed with tuberous sclerosis at 18months. From ages 0-18 months doctors thought I was having fibrile convulsions (seizures caused by change of body temperature). It was made aware that Epilepsy was a big part of my medical condition due to the tumours in my brain. I suffer from Tonic Clonic type seizures. From 18 months-4 years of age these were quite frequent after a lot of medication was tried and tested with no solution. I went into status epilectus at 4. Was taken to hospital via ambulance and was on paediatric intensive care unit for about 2 weeks. Finally I found a medication that worked for me (carbamazepine). I am now 25 years old and can happily say I have been seizure free for 20 years. I still take my medication regularly due to high risk of relapse if taken off my medication and my medical condition has certainly provided me with a few hurdles and sure will bring me plenty more in the future. I work in the NHS, and have a great and loving support network of family, friends and my boyfriend. I have been lucky to lead as close to normal life as I can.
Despite being seizure free for so long I still feel the frustration of the lack of understanding through media and how ignorant some people can be to "invisible disabilities". I want to make people more aware of epilepsy and the different forms and grade of severity all of us with epilepsy suffer from. We are all unique and we can lead normal lives. We shouldn't have to justify our condition for people to believe us and we shouldn't have to prove that we can look after ourselves and ease people's or friends anxieties who do not want the responsibility IF we have a seizure in their presence. This ignorance this fear needs to disappear. We need to take the time to understand the condition and not fear it.
I do not fear my condition. I do not let it define me. I've embraced it. I've accepted it. It's what makes me unique and I will conquer it everyday and live my life the way I want to live it :)