UK woman speaks out about her Ehlers-Danlos Syndrome

Natasha is struggling with walking and needs funding for a wheelchair to cope with her Ehlers-Danlos Syndrome. She helps raise awareness by working for EDS Support UK.

Published by: Stephanie Price 

 

natasha_1A MELIDEN woman who suffers with a rare condition wants to raise awareness as well as raise money to fund an electric wheel chair.

Natasha Evans, a 27-year-old psychology Masters graduate, lives with Ehlers-Danlos syndrome (EDS), a connective tissue disorder which means her joints can dislocate from two up to ten times a day. This can include her shoulders, hips, knees, thumbs, long bones in her feet and her toes.

The dislocations happen because the uncurable, genetic disorder means her ligaments are very stretchy, so they can’t hold her joints in place – and has an adverse effect on her organs, meaning her heart races when she stands up and she suffers with gastrointestinal issues and Chronic Fatigue Syndrome.

Natasha said: “My condition causes so much pain it’s unreal, every step is agony.

“On a good day I can walk with my sticks but on a bad day I’m stuck in bed, which is why I need an electric wheel chair. I can’t push myself in a normal wheelchair.”

Natasha doesn’t qualify for an electric wheelchair on the NHS as she able to stand unaided on her good days, but using a propelled wheelchair is proving to be exhausting and painful for her.

She said: “My condition varies so much from day to day. One minute I could be walking fine with my sticks, and the next I could have dislocated a joint and not be able to move.

“I want to be able to get involved with family activities without having to rely on anybody else, and want to not be stuck in bed on my bad days. I can never make plans with my family because I don’t know whether I will be having a good day or a bad day.”

Due to her own difficulties with this condition Natasha wants to raise awareness to help others who have or may think they have EDS.

Natasha, who also works for EDS Support UK, said: “I want people to understand that it’s very difficult as it’s an invisible illness – nobody knew anything about it in Wales. When I was young the doctors even accused me of making it up for attention, despite popping my joints out in front of them. It took until I went to university in Liverpool to get diagnosed.

“That day was the best day of my life because somebody believed me.

“It’s a post-code lottery here as NHS funding for out-of-Wales EDS-care is unavailable.”

Natasha needs to raise a total of £1,500 to purchase the wheel chair along with adaptions. You can sponsor Natasha on her Go Fund Me page at www.gofundme.com/zh9egfg or visit her Facebook page at ‘Tasha’s fight against Ehlers Danlos syndrome’.

You can find out more information about this condition by visiting www.ehlers-danlos.org.

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