Today (Friday 26 March) is Purple Day an annual opportunity to raise awareness and to help spread the word around epilepsy. The aim of today is to get people talking, asking questions and to offer support and guidance about the right way to help someone having a seizure. To celebrate Purple Day locally we would like to introduce Kaitlyn and share her story.
Kaitlyn is 17-years-old and is from Lancaster, she has complex medical needs including tuberous sclerosis, global development delay and suffers with a difficult epilepsy. Kaitlyn started suffering from seizures associated with epilepsy at around two years of age, this is believed to be a result of developing tuber sclerosis that had left her with multiple benign tumours on her heart, brain and kidneys. Kaitlyn’s epilepsy is quite severe which means she can have anything from five to one hundred episodes a day which can last from a few seconds to a few minutes each time. Seizures can vary from generalised tonic-clonic where all her limbs are jerking to periods where she is really distressed and unsettled to bouts where she has absence episodes. Kaitlyn has a wide spectrum of anti-epileptic medications which does not entirely stop all her seizures but it has certainly helped her quality of life. This along with the wonderful care provided by her loving parents and her compassionate Paediatric Consultant at Royal Lancaster Infirmary she has done amazingly well considering her condition is complicated by tuberous sclerosis.
More recently there have been changes in Kaitlyn’s condition which has massively affected the care she requires so the family are continuously adapting their routines to enable the best care possible for her. Kaitlyn has a younger 8-year-old brother Luethus who has grown up understanding all about epilepsy and who now is a great support. He can recognise the signs of the onset of a seizure and is able to alert his parents for help which is fantastic.
During the current COVID-19 pandemic Kaitlyn’s condition has meant that she had to be shielded from the virus which has affected her attendance at vitally important physio sessions, doctors appointments, school and respite care. Being out of routine has made this a tough year for the family but nevertheless they have kept strong and adapted to make the best of a difficult situation. Like many of us they are hoping to see some much-needed light at the end of the tunnel soon.
This positivity is what Purple Day is all about, yes epilepsy isn’t easy to live with but with help and support it can be managed. Today is dedicated to encouraging people to be more open about the condition, boosting a feeling of togetherness and spreading awareness.
Kaitlyn’s stepdad Matthew said: "I’m sharing our story because I want to help other local families who are living with epilepsy. I want to encourage them to seek help and support wherever they can. From our own personal experience there is some fantastic support out there you just need to ask. Please try not worry too much, there will be good days and bad days. I would encourage you to stay positive, ask questions and learn as much as you can about the condition, so you are best placed to provide the correct care and support your child needs on their own journey."
If you need further information or want to learn more about epilepsy, then please visit the below websites:
- Epilepsy Action
- Epilepsy Society
- Young Epilepsy - Young Epilepsy have a branch at Lancaster University.
Please contact Ms Gemma Boreham 01524 592111.
If you would like to get involved and support Purple Day please click here to donate.