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Woman with rare genetic condition suffers huge setback after life-changing surgery

Melanie has Ehlers Danlos Syndrome Credit: ITV Tyne Tees

A woman, whose life was transformed by surgery to help her live with a rare genetic condition, says she has suffered a huge setback.

Melanie Hartshorn, from Cramlington, has Ehlers Danlos Syndrome, a connective tissue disorder.

Melanie had spent years confined to bed, but after travelling to Spain for the life-changing surgery in July 2017, she'd begun leading a full life. Melanie raised over £160,000 for the treatment to fuse her skull, neck and spine to stop them dislocating. The surgery was not available on the NHS.

Now, following an operation on her knee, her progress is rapidly reversing.

  • Watch Julie Harrison's report here:

Melanie is spending most of her time in bed, using oxygen to alleviate the excruciating pain.

Just weeks ago, she didn't need a neck brace.

Melanie's mother, Molly, is her sole carer, and she says the change in her daughter's health has been heartbreaking.

It's just sole destroying that this has happened, and when she had her scan after a year. Everything seemed to be fusing fine, sent them across to Barcelona and he was really happy with her, and then two years later... it is just so sudden.

– Molly Hartshorn, Melanie's mother
Mel and her surgeons Dr.Gilete (left) and Dr.Oliver (right) Credit: Mel's Mission (Facebook)

Melanie needs to travel back to Spain to see her surgeon and has begun to try and raise money to pay for the treatment. She says the possibility that her skull has become unstable again is her "worst nightmare".

Melanie at her graduation ceremony in 2016 Credit: Newcastle University

Despite her condition, Melanie has always been committed to doing as much as possible.

In July 2016, Melanie managed to complete a BSc Hons in Biology – completing the final year of her degree from home. She attended her graduation ceremony at Newcastle University on a stretcher.

This set back is no different, she's determined to raise the money she needs to continue her fight for life.

Currently, Melanie must use oxygen to alleviate the pain Credit: ITV Tyne Tees

What is Ehlers-Danlos Syndrome?

EDS is a genetic condition and there are different types.

Here are some of the symptoms:

  • Fragile skin
  • Stretchy skin
  • Joint hypermobility including dislocations and chronic joint pain
  • Easy bruising
  • Fragile and extensible tissue