An 18-year-old girl whose life has been devastated by epilepsy has called for an urgent overhaul of the way sufferers like her are diagnosed and treated.
Michelle Morris, from Port Talbot, can have up to 15 'blackout' seizures a day but is frustrated with the NHS.
Her parents have taken out a loan to pay for private treatment after she had to wait nearly a year for an MRI scan.
It comes after the assembly government said it would improve epilepsy care to ensure prompt diagnosis and treatement.
Michelle, who was diagnosed with epilepsy last April, said she feels frustrated in finding the right medication and treatment to control her condition.
She is unable to be left alone because of the number of fits she has - some in which she blacks out for a few seconds and others where she collapses and has convulsions.
"We are at our wits end and don't know where to turn"
Her stepfather, Adrian Downs, has to take time off work to constantly watch her in case she collapses because her mother, Stephanie, is disabled.
"I can't do much, I have to have someone with me constantly," said Michelle, who worked as a hotel receptionist before her diagnosis.
"I've had to give up my job and studying, I can't go out with my friends, I can't go swimming. It's completely taken over my life."
The assembly government has announced plans to introduce measures to help people to self-manage their condition and ensure prompt diagnosis and treatment.
Michelle's father, Colin Morris, from Swansea, said help was urgently needed.
"We are at our wits end and don't know where to turn," he said.
" I think epilepsy doesn't get as much money and attention because it's not such a 'fashionable' illness"
Mr Morris and his ex-wife have also paid for a MRI scan because they said she had been waiting so long for one on the NHS.
They are now taking out loans for Michelle to be seen by a professor in London.
"We're getting mixed messages and it's all very confusing," said Mr Morris.
"I don't expect miracles. All I want is for someone to see Michelle and give her the correct information about medication so she can manage her condition and live a more normal life.
"My daughter's very depressed. She's crying constantly and she thinks she's a burden on her family."
Her mother Stephanie Downs added: "My other daughter was diagnosed as diabetic and she had wonderful support.
"But I think epilepsy doesn't get as much money and attention because it's not such a fashionable illness. It's crazy."
Under the assembly government plans, each Local Health Board would be required to develop a local action plan for epilepsy by September 2008 and ensure multi-disciplinary teams are in place by March 2009.
The proposals will be put out to consultation until 2 May.
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