Meningitis And My Family

Katy Mann | Posted 25.04.2017 | UK Lifestyle
Katy Mann

Six and a half years ago my life was changed forever. My baby son Charlie was diagnosed with pneumococcal meningitis. It turned our world upside down when he died six days after his diagnosis. As we lay with our baby while he took his last breath we couldn't believe our cheeky little 15 week old boy had been so cruelly taken from us

More Seizures And Epilepsy Awareness

Katy Mann | Posted 13.04.2017 | UK Lifestyle
Katy Mann

It's been a rather eventful couple of weeks here. I posted on Facebook that I made it to school without my wheelchair one day. Oh how the universe laughed at me. It's all been downhill ever since. My seizures have been terrible the past two weeks.

Pregnant Teen Dies After Having Epileptic Fit In The Bath

The Huffington Post | Jasmin Gray | Posted 05.04.2017 | UK Universities & Education

A pregnant teenager has died after having an epileptic fit while taking a bath. Australian Megan Walsh was taking a bath at a friend’s house in New...

Tips For Parenting With Epilepsy

Katy Mann | Posted 04.04.2017 | UK Parents
Katy Mann

I was diagnosed with epilepsy almost a year ago now and one of the toughest challenges for me has been looking after my two children, James (9) and Emily (5). I have atonic seizures, which means I fall several times a day

Mother's Day With A Chronic Illness

Katy Mann | Posted 24.03.2017 | UK Lifestyle
Katy Mann

We went out for lunch on Sunday as an early Mother's Day treat and I almost face planted my lunch. A coat strategically placed on the table meant I could have a nap while eating. There's no choosing when I sleep, it's when my body allows me to stay awake. My social skills aren't great though!

Surviving A Sleepless Life...

Ruth Drake | Posted 20.03.2017 | UK Parents
Ruth Drake

Ultimately, support and understanding, not only from each other but also friends, family and work colleagues is what is paramount in retaining your health, sanity and relationship. Don't underestimate people, most folk have experienced a sleepless night and will know exactly how you feel if you're dealing with it on such a regular basis.

Dealing With An Epilepsy Diagnosis

Katy Mann | Posted 17.03.2017 | UK Lifestyle
Katy Mann

So the purpose of this blog is to see the funny side of life. Life may be very difficult right now but I still have my sense of humour. I can only compare my life at the moment to one of a slug. I spend most of my time horizontal and moving slowly from room to room. The difference is I have arms so while I may feel as useless as a slug right now I still have the ability to type.

Scientists Have Uncovered An Extreme Way To Boost Your Short-Term Memory

The Huffington Post | Oscar Williams | Posted 14.03.2017 | UK Tech

If you want to boost your memory, you could try out a brain-training app or give the ancient Greeks’ techniques a go. But it’s probably best to st...

People With Epilepsy Are Being Accused Of Drunkenness And It Has To Stop

The Huffington Post | Rachel Moss | Posted 31.01.2017 | UK Lifestyle

As Dry January ends, a charity is urging the public to think twice before assuming that a person who is staggering around in a confused state is drunk...


Laura Rutherford | Posted 09.12.2016 | UK Parents
Laura Rutherford

Now that Brody is nearly 5, I have finally got used to the fact that Global Development Delay (GDD) doesn't mean "may catch up" for us. It's forever. And because he is still primarily undiagnosed, despite an autism and epilepsy diagnosis (as well as a few others), GDD seems to be moving on to a new "catch all" term - learning disability.

When Is It OK To Give Children Cannabis?

Mary Biles | Posted 28.11.2016 | UK Lifestyle
Mary Biles

Vera Twomey-Barry, mother of 6-year-old Ava who, who due to a rare genetic condition called Dravet Syndrome, suffers from as many as 20 epileptic seizures a day, decided to march the 300km to Dublin from her home in Cork.

Take It Back

Vikki Hammond | Posted 27.10.2016 | UK Parents
Vikki Hammond

Unless you have had experience of having a disability or caring for someone with a disability do not judge. Words hurt, we have feeling too. Every comment every snigger or every stare it stays in our heart. What you think you know, you know nothing. My child is my world, my life is not what I thought it would be, I am a carer I am a wife and a mum, I am no longer me.

Cannabis-Based Drug Could Help Thousands Of Epilepsy Patients, New Trial Suggests

The Huffington Post | Rachel Moss | Posted 03.10.2016 | UK Lifestyle

A drug derived from cannabis could dramatically improve the lives of people with epilepsy, new research suggests. Scientists at Great Ormond Street Ho...

Who Am I?

Vikki Hammond | Posted 12.09.2016 | UK Parents
Vikki Hammond

I am your voice, I do these things because I want the best for you. I want you here with me for as long as possible. Although what you have gone through is hard, and every day is a battle. I need you, here with me. Because without you I am nothing, I am no one. But with you I am your mum x

From The Heart, A Letter To My Children

Vikki Hammond | Posted 26.08.2016 | UK Parents
Vikki Hammond

Bailey summed it all up for me one day in the car.. "Mummy we are so lucky to have Kai, just think some people never get to experience someone like him. We are very lucky." With that sentence I felt my job was done, Kai has brought more joy into your life's than I could ever imagine.

Birthdays & Butterflies - The First Chapter Of My Son's Epilepsy Story

Roisin McArdle | Posted 24.08.2016 | UK Parents
Roisin McArdle

Over the next week I observed a further 6 or 7 seizures. I spoke with his school teacher who said she had noticed a remarkable deterioration in his concentration and attention since the start of the school term and she had been planning to move him to the front of the class to be closer to her.

An Open Letter to the Local Council...

Rachel Wright | Posted 04.07.2016 | UK Parents
Rachel Wright

Once you are home, after your difficult day, I hope you are able to relax on the sofa with your loved ones. When you do, please spare a thought for this family who, as a result of your difficult day, have had this 'luxury' restricted.

Hello Epilepsy

Laura Rutherford | Posted 21.06.2016 | UK Parents
Laura Rutherford

When your child has epilepsy, it is a constant weight on your mind. Without fail, the moment that weight eases off, a seizure will happen - just to make sure you know it's still there. It's thoughtful like that.

CDKL5 - Could This Be the Diagnosis You Seek?

Jonnie Temple | Posted 06.06.2016 | UK Parents
Jonnie Temple

It might be that your child has severe epilepsy and disabilities, but no diagnosis. Keep pushing, keep exploring the different options, and rarer conditions like Dravet and CDKL5. But more and more children are being diagnosed with CDKL5 as awareness spreads. We can all do something to share and make others aware of these condtions

Saving Lives With the Tech That Saved Our Son

Adrian Perry | Posted 30.05.2016 | UK Tech
Adrian Perry

PulseGuard successfully alerted us to every one of Tom's seizures within the first two years of trials. Whilst talking to Tom's consultants, other Epilepsy professionals and parents, it was very clear that a lot of people were interested in having an alarm system that seemed to be as accurate as it was proving, but this would mean throwing everything we had into it.

Mum Films Daughter's Seizures To Alert Parents Of Little-Known Condition

The Huffington Post | Amy Packham | Posted 20.05.2016 | UK Parents

A mum filmed her daughter having seizures to alert other parents how to detect a rare form of childhood epilepsy. Belen Sullivan Robbins said her daug...

Women With Epilepsy Must Be 'Empowered' To Become Experts During Pregnancy

The Huffington Post | Amy Packham | Posted 19.05.2016 | UK Parents

Pregnant women with epilepsy are faced with worries that go beyond morning sickness and heightened hormones. They have to consider the likelihood of s...

Why I Kept My Epilepsy Hidden for So Long

Vicky Smith | Posted 14.04.2017 | UK Lifestyle
Vicky Smith

My early childhood memories are full of seizures, nasty medicines and hospital trips. I had tonic clonic seizures when I was asleep and absence seizures during the day. I lived on a cocktail of drugs while the doctors tried to work out what would work best for me.

Study Reveals Reassuring News For Pregnant Women With Epilepsy

The Huffington Post | Amy Packham | Posted 07.04.2016 | UK Parents

Women who take the epilepsy drug lamotrigine during pregnancy will not "significantly" increase the risk of their child having birth defects, a new st...

People With Autism 'Die 16 Years Earlier Than The General Population'

The Huffington Post | Rachel Moss | Posted 18.03.2016 | UK Lifestyle

People with autism are dying decades before the average person, research has revealed. Scientists from Sweden analysed data from 27,000 people with au...