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Contact Details |
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“Working together with individuals, families and medical professionals to offer support and information on Syncope and Reflex Anoxic Seizures” |
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Shelly’s Story |
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Drama teacher Shelley Wilson has suffered from Reflex Anoxic Seizures for 25 years – but she was only correctly diagnosed three 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. Visits to the doctor as a child did not reveal the cause of her illness – she was even offered epilepsy drugs, which her mother, a nurse, refused. She worked out that avoiding triggers such as thirst and hunger made the attacks less frequent but they never went away completely. Her seizures have even occurred while on a plane en route to Australia - a humiliating experience in front of a planeload of strangers. It wasn’t until she had a particularly bad attack at the doctor’s surgery after some travel inoculations, that she was finally referred to a specialist. |
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The specialist suspected Shelley was suffering from Vasovagal Syncope, another name for RAS. A tilt-table test was carried out, where the patient is strapped to a bed, which is then tilted to test the effect on the heart. She was stunned to discover her heart had been stopping during the syncopal attacks - and believes she has had near-death experiences while her heart has not been beating. The results of the tilt table test led to Sherry being fitted with a pacemaker in April 2002. A few weeks later, she felt the first warning signs of an attack but the pacemaker kicked in and prevented her heart stopping – the seizure was averted. Her condition has meant that she has been unable to drive in case she suffers a seizure while at the wheel, but she says having the pacemaker implanted has transformed her life: “Finally being diagnosed with my condition and also being offered a pacemaker was a life-changing opportunity. I have now had my pacemaker over a year and have a check-up every twelve months. The only way it has interfered with my life is that I can't do contact sports in case I am hit in the chest and I get frisked at the airport as I cannot enter the magnetic tunnel. “ Shelley’s pacemaker was implanted beneath the chest muscle, which means it cannot be seen under the skin. It operates only when she is about to have a seizure, but having it there to kick into action when needed means she is now able to live a much more normal life. |
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