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SJS Robs Girl of Her Childhood

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Ashford, UKFor the past 16 years Helen has undergone countless eye surgeries and endured ongoing pain. It all started when she was eight years old and was innocently given a headache remedy at a birthday party. Helen had an allergic reaction to the drug, a reaction known as Stevens-Johnson Syndrome (SJS).

"I remember mostly from what my parents told me," says Helen. "They believe it was because someone gave me aspirin. A few days after the party I broke out in a rash and had a headache. The local doctor put my symptoms down to measles. I may have been given the antibiotic amoxil then.

"A second doctor agreed but a third one realized it was something else. By then I was hallucinating, had a very high fever, and a heat rash. My parents rushed me to the hospital, and there they gave me blood tests every two hours. I was in there for three weeks. They weren't sure what it was; all they could find was the common cold!

Eye Surgery"My fever got so bad that no one could touch my skin. It was just falling off and it blistered then turned into scabs. One thing I remember well is a cold air bed; they had to bring it in from a foreign country. It blew cold air but it was so soft. And then at the same time, my eyes were stuck shut for a week."

In 1991, SJS was little known in the UK and as a result, Helen's parents were not told what she was suffering from until it was almost over. At first, the doctors informed them that Helen would die. A week later they modified their judgment that she would indeed pull through but with permanent blindness. Refusing to give up, they then decided to force her eyes open.

"I remember them trying to pry my eyes open with their fingertips," says Helen. "They had to hold me down and I struggled so much I'm left with these scars on my face. Right there and then my mother made them stop any more interventions on me."

Between the ages of eight and 12, Helen also saw doctors in London for many different operations. "My main problem was that my eyelashes grew inward into the cornea and the white of my eye," she says. "I've been passed from one hospital to another, from one doctor to another. They tried all kinds of treatments --from lasering the eyelashes, which wasn't a very nice experience, to six or seven sessions of cryrotherapy, where they freeze the eyelashes to get them from going backwards.

"Last September, in 2007, was my last operation. They cut the skin away from my eyelids trying to stop them going inwards. The lids had hardened and tightened."

While researching her condition, Helen found that SJS was more common in the United States, where there also seemed to be more help available. On one particular SJS website where Helen posts, one woman suggested contact lenses. Helen decided to give them a shot even though she had already tried them at 10 but her eyes had been too sensitive.

"The contact lenses have changed my life. When I take them out now I realize how much pain I used to be in. I can look up now," says Helen.

The inability to accomplish that simple act made her school years unbearable. "The teachers would try and make me look up at the board but I couldn't," Helen says, "and some of them were very horrible. And the kids, well, they didn't understand. It's like if you've got a bad leg you can still get on but with eye problems, it completely paralyzed me. I often didn't want to go to school because I was bullied.

"I feel that if the doctors had known more about SJS at the time, things would've gone better for me. I feel like I've wasted most of my life and certainly missed a lot of childhood activities like swimming or going to concerts with bright lights.

"I'm a mother now, with twins. I think about what my parents went through and how hard it must have been for them to make me go to school."

Helen says her horrific ordeal has left her both mentally and internally scarred. "I've started counseling now and I didn't realize my illness had affected me so much - my confidence, it brought on depression, being ill all the time made me cry all the time. I wasn't patient with people and not very sociable. But now I feel I can do more with my life. I've even started driving lessons. But, you know, you never get over it.


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If you or a loved one has suffered from Stevens Johnson Syndrome, please contact a lawyer involved in a possible [SJS Lawsuit] to review your case at no cost or obligation.


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