STARS Patient Information
This page contains stories of STARS members with Reflex Anoxic Seizures (RAS).
When Bekah was two, she fell off a concrete step and bumped her head. She then had her first seizure, much to Mum's horror.
Ben was 4 months old when he accidentally received a bump to his head and experienced his first Reflex Anoxic Seizure
Freya was only 16 months when she had what we now know to be her first seizure.
My name is Steve, I'm 29 years old, live in Walsall and I have Reflex Anoxic Seizures.
My name is Nicole and I am 20 years old. Since the age of 15 years old I have suffered with chronic health issues (asthma, multiple allergies) but nothing could have prepared me for what happened during December 2013.
When I took Otto for his first inoculations, at the age of two months, I dreaded it like any other mother does. But I wasn't prepared for the reaction that he had.
Patrick is two- years-old, and like any other cheeky toddler, he runs around having fun before falling or crashing into something and hurting himself - quite often ending in tears!
Heidi had never shown any signs of the condition until she was 2 years old. One morning, just after her birthday, we were getting ready for work, rushing as usual, when Heidi fell and bumped her head. She walked to me afterwards, but then went limp in my arms with her eyes rolling and arms jerking, deathly white with a blue tinge to her lips. Panic set in and an ambulance (the first of many!) was called.
My life changed when my son and first born, came into the world in August 1991. Nothing so unique in that, but it was to change in ways I could never have envisaged or prepared for.
One morning, enjoying some mummy-daughter time whilst Archie, our three year old son was at nursery, Georgie cried out suddenly, as if in pain. I picked her up, thinking that it must be her teeth, and she immediately went limp in my arms and appeared to stop breathing for a few seconds.
My first memory of having an RAS attack was when I fell over in the garden chasing my older brother. I fell and bumped my head on a rock and the next thing I remember was waking up on the sofa with a chronic headache and a very worried older brother’s face looking at me.
Since the age of two I have suffered from RAS. At first everyone just thought I was a clumsy child always falling over and hurting myself. My mum was worried as sometimes I would fall without any reason. My mum talked to our G.P, who then referred me to my local hospital to see a paediatrician. The paediatrician told her that I had a problem with my feet, “balled feet” where the soles of my feet weren’t flat. He recommended that I wore supportive shoes, which would help them to grow with a flat sole.
I wanted to share Dominic's story because I have recently joined STARS as Dominic was diagnosed with RAS. When I logged on to read the case stories, I cried tears of joy - for a change. Finally I didn't feel alone with what my family has been through.
Eliza is now a healthy 6 year-old – thanks to her pacemaker. When Eliza was a baby, she would 'go off' – looking grey, slightly stiff and yelping for breath. As a tiny baby she had also slept for long periods (without waking to feed) although this was never linked directly to her later diagnosis.
As a mum, I remember vividly those dark days when Joel would have had multiple RAS attacks per day, especially whenhe was toddling, or go a week without one and I would feel elated only to be brought down to earth again when another attack occurred. Naturally I wanted to wrap him in cotton wool and protect him from any incident likely to lead to an RAS. I remember wondering if Joel could have the normal life other little boys have.
Louise had her first real episode on Easter Sunday 2005 while visiting her grandparents in Stonehaven. She was 8 months old. Louise was sitting in her highchair and suddenly starting having a seizure. I immediately lifted her out and by the time I had gone through to my husband Colin, she had finished her seizure. We went up to the Royal Sick Kids in Aberdeen and Louise absolutely fine, although tired. The doctors did a series of tests including bloods and urine analysis but found nothing. They released her later that day with a possible diagnosis of febrile convulsions. Leading up to her first seizure, we had noticed that Louise had some moments when she looked dazed and would become ‘floppy’ for a few minutes.
Hi, my name is Naomi and I am 15 years old. In the summer 2007 newsletter I wrote about my experience of living with RAS and about having an ILR (Implantable Loop Recorder) implanted to record my heart rhythm.
My name is Nicola and I am 17 years old. I was diagnosed with RAS when I was 2 years old and it has been part of my life ever since. I can't really remember what it was like when I was younger to live with RAS because I was too young to understand, but often my Mum tells me how hard it was for both her and my Gran, who lives next door, anytime I had a seizure my Mum couldn't watch, as it was so hard for her to watch me go through this in front of her and she knew there was nothing she could do but wait for me to breath again. When I started school I was still having seizures,
Drama teacher Shelley Wilson has suffered from Reflex Anoxic Seizures for 25 years – but she was only correctly diagnosed a few years ago. She had her first seizure when she was just two years old. Many children with the illness happily grow out of it before they leave childhood, but for some like Shelley, it is a debilitating condition that she has had to learn to live with.