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Rochdale mum who survived rare condition EDS to launch UK charity

Samantha Smith Image copyright Save Samantha
Image caption Samantha Smith says she wants to raise the flag with other people with EDS

A mother recovering from life-saving surgery in the US is launching a charity to help support others with the same rare condition.

Samantha Smith, 32, from Rochdale, Greater Manchester, had an operation in February to rebuild her neck, which was weakened by Ehlers-Danlos Syndrome.

She said she wanted to "raise the flag" for EDS sufferers in the UK as care is not always available on the NHS.

"People with EDS should not be left to rot and die," she said.

EDS is a rare connective tissue disorder in which tissue providing support in the skin, tendons, ligaments, blood vessels, internal organs and bones is weaker.

In Ms Smith's case, her neck muscles became too weak to hold her head up without the use of a brace.

Image copyright Samantha Smith
Image caption Samantha Smith was diagnosed with Ehlers-Danlos Syndrome in 2017

She said it had been an "emotional rollercoaster" since she was diagnosed in 2017, before she eventually had £250,000 surgery at the Mayo Clinic in Arizona to fuse bones in her spine.

The treatment was not offered by the NHS, which said surgery decisions were taken "based on whether the benefits to the individual patient outweigh the risks".

The mother-of-two raised the money through crowd-funding.

The procedure was initially halted after her bank generated a fraud alert when she tried to pay.

Ms Smith, who has children Jensen, 10, and Brooke, nine, said: "I'm rebuilding my life now and really enjoying being able to do things again with the kids.

"The kids have been amazing through it all. It is a long road to recovery though, and EDS is very unpredictable."

Image copyright Samantha Smith
Image caption Samantha Smith pictured with her children before the operation in the US

Ms Smith said she felt "grateful and thankful" to have had the operation, but more treatment options "should be available here".

She said that was what inspired her to found a charity to help others, to raise awareness and provide "care and a future" for sufferers.

The charity will be called Save Samantha, a title she used to raise funds for her surgery, and Ms Smith is in initial talks with the Charity Commission.

She added: "People with EDS should not be left to rot and die."

A spokesman for NHS England said: "Despite the rarity of EDS the NHS does fund surgery when it is recommended by clinicians.

"But the decision to undertake such complex procedures has to be based on whether the benefits to the individual patient outweigh the risks."

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