Ehlers Danos Syndrome

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Nine-year-old Alex Etherington, from Stanley in County Durham, loves being active. He’s learning to fence, enjoys riding his bike and, like most boys of his age, has fun running around.

Such achievements are remarkable for someone who was diagnosed with Ehlers Danlos Syndrome (EDS) after falling at a nursery when he was just three years old and going to Accident & Emergency with a suspected broken leg.

“It wasn’t a fracture, but the consultant realised something wasn’t right,” said Alex’s mum Jacqui. “We were really lucky that EDS was identified so early because it can take years – especially, as in our case, when it isn’t genetic.”

May is EDS awareness month. Often but not always inherited, it’s a condition that affects connective tissues – causing a range of symptoms including joint hypermobility, easily dislocated joints, extreme tiredness, digestive problems, dizziness and skin that bruises easily. 

“Alex suffered gastric reflux and he often got black marks on his body,” said Jacqui. “I’d taken him to our GP many times, but it was the fall at nursery that really got the ball rolling in terms of getting the help he needed.”

Finding the help to live a normal life

As a clinical lead physiotherapist, Jacqui knew about DM Orthotics from her work with adults with learning disabilities.

“We went to see Pam Cowans, one of the company’s specialists, and she prescribed DMO® Leggings. The difference was amazing. Before he started wearing them, Alex would cry out with intense pain during the night and easily lose his balance. After they were fitted, he was transformed into a child who was praised for his beautiful posture at school and who no longer keeps falling.”

Six years on and Alex’s leggings are now black to look like skins, rather than Spiderman red and blue. Designed to improve lower limb function and body position whilst increasing core and pelvic stability, they have become indispensable in helping Alex lead a normal life.

“He’s got so much confidence and very little fear,” said Jacqui. “He’s been able to play football and even rugby at school, climb, jump on a trampoline and is developing good bat and ball skills. It’s wonderful to see him taking everything in his stride and not being afraid to try different activities.

“EDS is a condition that relatively few people understand or know much about – yet it affects so many adults and children. 

“It can’t be cured at the moment but, as Alex’s orthotics have more than proved, it can be successfully treated.”

For more information, visit www.dmorthotics.com

Sue Bradbury
Managing Director at SBPR Ltd | | + posts

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