Story about Stevens Johnson Syndrome .

My Granddaughter's story

Jul 10, 2016


My granddaughter had TEN a year ago. She had a rash that was diagnosed as Scarlett fever. After 24hours she wasd admitted to our local emergency ward. She was diagnosed with SJS within a few hours and transferred to Evelina London. The care she had there was amazing. She was in Intensive Care on breathing machines as they needed to protect her airways. Her bladder etc was affected but the damages doesn't seem long term. She had some damage to her corneas and tear ducts. She is now under Queen Victoria Hospital Opthalmic team. Her nails have been damaged and don't seem to be growing. It has become apparent that many GP's etc have no knowledge of SJS/TEN. This is very worrying. Doctors need more training in SJS/TEN. 

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