SUDEP Action

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Cheryl Woollard raises awareness for SUDEP Awareness Day

My sister Nicole (Nic) was 28 when she passed away from Sudden Unexpected Death in Epilepsy (SUDEP) in June 2013. She was happily married with a 6 year old daughter and an extended family.

Nic had been volunteering with an Epilepsy charity and 'manning' the Epilepsy information desk at our local hospital, she was very proud of this. Nic loved writing poems and entered poetry competitions.  

Nic enjoyed sewing and loved reading, completing books in a day on several occasions.  Nic was selfless and despite her seizures, she did her best to keep an upbeat attitude.  She is greatly missed by our family.

After Nic passed away, one of my mum’s friends made us aware of SUDEP Action as she had also lost someone to SUDEP. I then looked up SUDEP Action on the internet, Facebook and Twitter and have been following and supporting wherever I can.

I decided to raise awareness for SUDEP Awareness Day because sadly, our family were unaware of SUDEP until after my sister passed away. Despite Nic being diagnosed with epilepsy aged 14, no one from her medical team had ever raised the subject of SUDEP.  Our main worries regarding her epilepsy were the injuries she would sustain during a seizure.  We never, for one second imagined this could happen. If we had known, we would have done some research and tried our best to help prevent this from happening.

In preparation for SUDEP Awareness Day, I contacted my local GP surgery and asked them if they would display the SUDEP Action information leaflets in their waiting rooms. I asked them to give the leaflets to their medical staff they happily agreed. I ordered and dropped the leaflets off to them a few weeks prior to SUDEP Awareness day.

I wrote a small piece in our staff bulletin telling them about SUDEP Awareness Day and why I was raising awareness of SUDEP.  I told them where I would place the SUDEP information leaflets and where they could access the downloadable copies. 

On SUDEP Awareness Day, I placed leaflets around the building. I brought cakes into my office, either orange in colour or flavour, and made a poster saying that in order to have a cake they needed to take and read at least one leaflet. They all did this and we happened to have some large meetings happening in the building so the attendees were shown to our office. Everyone asked questions and read the statement from the bulletin. I also had a few emails requesting printable copies of the leaflets so I downloaded them from the SUDEP Action website. 

Unbeknown to me, my amazing colleagues did a collection after the day from the staff in our office and raised £35.00, this was a great surprise. I was really pleased with the response and how the day went. I have the pleasure of working with health professionals and only a few people had ever heard of SUDEP, the rest were totally unaware. Some of the meeting attendees said they had been unaware until recently when it had happened to someone locally or to a friend of a friend. Everyone was very interactive and keen to hear about what could be done to help.
I think SUDEP Awareness Day is a great idea and should definitely be something that is continued every year to raise awareness and support. Hopefully it will grow and get bigger each year.