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Schoolgirl goes out of her way to raise awareness about Ehlers Danlos Syndrome

By Cambridge News  |  Posted: May 23, 2014

  • A zebra themed day was held at Mepal and Witcham Primary School to raise money awareness for Ehlers Danlos Syndrome (EDS). Pupil Jess Johnson has the disorder and she is pictured with mum Donna.

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A little girl who was diagnosed with a rare syndrome less than a year ago is going out of her way to raise awareness about the disorder.

Jessica Johnson, 7, has Ehlers Danlos Syndrome (EDS) - a rare connective tissue disorder caused by a defect in the structure or production of collagen.

Jessica, who lives with her mum, Donna, in Haddenham, and who was only diagnosed last August, has to wear a spinal brace and undergo vigorous physiotherapy everyday.

But brave Jessica, who will soon be attending Great Ormond Street Hospital for regular treatment, is determined to raise more awareness about the syndrome.

On Thursday, a black and white themed fancy dress day was held at her school, Mepal and Witcham Primary School, to raise awareness and funds for Ehlers Danlos Support UK.

Donna, who works at the school, said: “It’s been like a rollercoaster since Jessie was diagnosed - she’s been extremely poorly but she just tends to get on with it.

“Her attitude is brilliant and I’m so proud of her. She decided to write to her head teacher, Nicola Jones, asking if she could do something to raise awareness and we came up with the fancy dress day as the charity’s logo is a zebra.

“We had a fantastic day and raised more than £100. Everyone really got into the swing of it.”

Jessica is already planning another event to raise awareness.

Visit www.ehlers-danlos.org for more information.

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