Help for Kayleigh (Non Epileptic Attack Disorder )

I am setting up this fund page for my daughter Kayleigh, to raise funds and awareness for PNES /NEAD Psychogenic nonepileptic seizures/Non epileptic attack disorder. Unlike epilepsy there are not many available resources for help with this condition.

Kayleigh's Story

I started suffering seizures almost 2 years ago and at first they were, one seizure, sometimes weeks apart and I was diagnosed with Syncope.

At the beginning of the Pandemic last year and subsequent lock down in March my seizures spiked, sometimes having several a day with numerous hospital admissions, low oxygen levels (80%) and high heart rate happening mainly in my sleep. They have remained this way ever since.

I was referred back to neurology and was told it was focal epilepsy and put on anti-seizure meds, which didn't help the seizures and caused a burn-like rash which has left me with scars.

I was then diagnosed with NEAD non epileptic attack disorder, this disorder mimics epilepsy but can not be controlled by medication, it requires lots of therapy. I also suffer Todd's Paralysis sometimes after a seizure which mimics a stroke, so I lose all use of my left side and my speech goes, this can last upto 3 days.
I am at risk of Sudden death, injuries incurred during a seizure, I have fallen down stairs, scalded myself and in the pic above recently banged my head off the table.

It's like I am on a cycle, stress causes seizures,  seizures cause stress, and have had as many as 19 seizures in 2 days, resulting in numerous hospital visits, thats without other stressful situations in my life. All increasing my risk of serious injury or death if help is not arranged quickly. I have been referred for therapy 6 months ago but have been advised still a 12 month plus wait .

This fundraiser is for a bed seizure monitor, anti-suffocation pillows, a watch seizure monitor, various aids when I can't get about or speak, so people can be alerted that I am having a seizure more quickly and arrange help and to source private therapy to hopefully put an end to these episodes for good.

You could literally save my life.


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Debbie O'connor 
West Bromwich, West Midlands, United Kingdom
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