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STARS Patient Information

This page contains stories of STARS members with Reflex Anoxic Seizures (RAS).

Fiona's Story

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. Read more

 

Harminder's Story

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. Read more

 

Dominic's Story

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. Read more

 

Eliza's Story

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. Read more

 

Joel's Story

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. Read more

 

Louise's Story

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. Read more

 

Naomi's Story

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. Read more

 

Nicola's Story

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. Read more

 

Shelly's Story

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. Read more


Get in touch for more help and information

+44 (0) 1789 867 503info@stars.org.uk

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