Diagnosed with epilepsy during the COVID-19 pandemic, Danielle’s life changed dramatically.
Danielle’s mother Corinne shares the challenges her daughter has faced and why they are doing the Edinburgh Kiltwalk to raise money for Epilepsy Scotland.
Danielle was diagnosed with focal and tonic clonic seizures aged 11 during the COVID pandemic.
She had her first seizure during the first lock down which lasted 20 minutes.
We never knew what was happening at the time as she just lost consciousness, was sick and her lips went blue. We had to call for an ambulance. At the hospital they told us she had just fainted.
She had a further two seizures after the initial one on two separate occasions.
The second one lasted for about 40 minutes and the third was for about 20 minutes. After the third seizure we were told she had epilepsy and then she was put onto medication.
Danielle has focal and tonic seizures and they cause her to be very sleepy and disorientated after a seizure. She also suffers from memory loss of what she had done leading up to the seizures.
Challenges
Danielle faces many challenges however the biggest is that she suffers from bad anxiety and a lack of confidence.
Danielle struggles to make new friends as she gets scared to talk to new people.
It has affected her attendance at school which has also impacted her learning and she fears not knowing when a seizure may happen and that they can come at any point.
I am scared that she could have seizures at any time with no warning. I live in fear that I could lose my daughter during one of her seizures.
Danielle having a seizure and I am not there for her. I am fortunate that I work at home, so I can be there whenever she needs me.
I am so scared my whole body shakes but there is that thing in you that just makes you do what you must do and stay as calm as possible and talk to her to reassure her.
Her dad is the calm one which makes us all strong. Her sister is younger and she is so brave by getting her medication that she needs.
She has not had one that lasts longer than five minutes in the last year. I am so glad when she starts to come around after her seizure and begins to talk to us again.
Danielle’s epilepsy stopped for three years but in the last year Danielle’s epilepsy came back worse.
She has a seizure roughly every three weeks, as medication is not working to control them but we started a new one three weeks ago and seems to be going in the right direction.
The epilepsy nurses at the hospital give me support and I can phone or email them at any time.
I have also contacted Epilepsy Scotland a few times to talk to someone and see what support and help is out there for us and Danielle. They have been great. Danielle is now seeing a counsellor.
Fundraising for Epilepsy Scotland
We decided to fundraise for Epilepsy Scotland because we would like to raise awareness about epilepsy and provide some support to Epilepsy Scotland too.
I would tell people to DO IT and not put it off as it all goes to a really good cause.
Since Danielle was diagnosed it was noticed that a lot of people did not understand what epilepsy was or they would make jokes about it.
We want to try and make more people aware of epilepsy and that the myths aren’t true and make people less scared and to talk about it more.
People shouldn’t be scared to ask questions if they don’t understand.
We need to raise around £700,000 each year to provide services to help people like Corrine and Danielle.
Please consider donating to us to help us continue to be there for people like Corrine and Danielle. To donate, please click here.