JOHN Baker suffers daily blackouts, has no social life and rarely leaves the house.

The dad-of-two, from Barton, Oxford, was diagnosed with photosensitive epilepsy when he was just nine years old.

Now he has spoken of his daily battle with the condition and its devastating effects not just on him, but his whole family.

He said: “I have not got a social life. I only go out if it is really necessary. I usually have to wait until night time to get out in the garden with my children.

“I black out every day. It is like switching off the lights and then I come back again.”

Over the years, Mr Baker’s fits have left him with black eyes and a fractured cheekbone.

He once ended up in the John Radcliffe Hospital with a suspected broken back after having a fit while walking up stairs.

When Mr Baker, who is unable to work due to his condition, blacks out, he passes out for a couple of minutes. But when he fits he turns blue, goes rigid, foams at the mouth and can fall unconscious for 45 minutes.

His fits happen less frequently than the black outs, but when they do occur, his family have to call an ambulance.

The 44-year-old’s condition is triggered by light and it has become steadily worse since he was diagnosed.

The family has installed darker curtains which are closed when sunlight enters the house.

Mr Baker said: “I would like someone to talk to and tell my problems to. Someone who will know what I am going through.

“I don’t think anyone can really understand epilepsy unless they have epilepsy themselves. It is an everyday thing for me. I just get on with life as best as I can.

“I cannot stay in and look at the four walls all the time. That would mean the epilepsy is winning.”

His wife, Safia, 41, couldn’t find any groups for sufferers of epilepsy and is now trying to set one up herself.

She said: “I can’t find a support group around here where people can talk or maybe even go out once in a while.”

She added: “I just want to make a difference. I am sure there are other people in the same situation.

Mrs Baker said: “He has got no friends. We never go out as a family and we cannot go on holiday together.

“He blacks out every day. It affects the rest of the family. Everything revolves around it.”

The couple have been married for eight years and have two children, Usman, seven, and Oria, 15, who have grown used to their father’s blackouts.

Mr Baker, who cannot drive, said: “My wife does 99 per cent of the things I need doing for me. She is my backbone.”

While epilepsy is treatable in a number of different ways, such as by removing the part of the brain that causes the seizures, Mr Baker’s condition is too widespread through his brain for such a procedure to be effective, though he does take medication for his disorder.

  • Anyone interested in forming the group with Mrs Baker should contact her on 07967 967081.