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£1,645raised of £2,000 target by 21 supporters

Weʼre raising £2,000 to go toward the surgery my niece is currently needing due to having hEDS & CCI. The NHS will not cover the costs. Please see the story below.

Bradford, UK

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Story

Hypermobile Ehlers Danlos Syndrome (hEDS) is a connective tissue disorder primarily caused by faulty collagen resulting in the joints not being adequately supported by the ligaments. The condition is not, however, limited to joint subluxation/dislocation, which in itself generates chronic pain, fatigue and vulnerability to soft tissue injuries, rather it is a complex constellation of symptoms which can include cardiovascular problems such as tachycardia, bowel dysfunction and prolapses. In addition, and on average, one in fifteen sufferers develop cranio-cervical instability (CCI.) This is a structural instability of the cranio-cervical junction – where the cervical spine connects to the skull – and causes debilitating pain in the head and neck. Other neurological problems may include deformation of the brainstem and the spinal cord.

My niece has both hEDS and CCI. She is 27 years old and has suffered from musculoskeletal pain and injuries since her early teens. She has had scoliosis surgery to correct a spinal curvature and much of her mid to lower spine is fused, supported by metal rods. Like many patients with hEDS she has struggled to get a diagnosis of her condition. (On average, it takes the NHS 13 years to diagnose.) Also, like many others, she has not had any specialist support. (There is currently a three- year waiting list at the nearest EDS clinic in Manchester.) And, again like many other sufferers, she has had to pay privately for specialist scans. Now she has a diagnosis of CCI there is still no NHS support, advice or treatment available. This condition is severely disabling and potentially life-threatening. There are only a small number of specialist surgeons who operate on hEDS patients with CCI and not one of them is in the UK. A renowned Spanish specialist has recommended that Ella undergoes a full neck fusion to prevent the progression of her condition. The NHS do not fund this surgery whether carried out at home or abroad.

To support my niece in raising funds to pay towards her surgery im particpating in a Tough Mudder event, which is a half marathon consitsing of 20 obstacles featuring mud, water, ice and electricity.

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Pam Croft

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    1 month ago

    Pam Croft started crowdfunding

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    Page last updated on: 8/7/2018 9:35 PM

    Supporters

    21

    • Hedia Merlin

      Hedia Merlin

      Aug 7, 2018

      Amazing Pam, so proud of you, nail it ! Lots of love from us and the boys xxx

      £20.00

    • Debbie Rhodes

      Debbie Rhodes

      Jul 28, 2018

      Well done today!!!

      £10.00

    • Janette Cartwright

      Janette Cartwright

      Jul 28, 2018

      Well done all of you.xxx

      £20.00

    • Anonymous

      Anonymous

      Jul 28, 2018

    • angela barraclough

      angela barraclough

      Jul 28, 2018

      Good luck pam we’re so proud of what you are doing Lots of love Ang,Andrew,James and alysha xxxx

      £20.00

    • Cameron Jones

      Cameron Jones

      Jul 28, 2018

      Good luck it’s amazing what your doing from cam, Sam and summar

      £400.00

    • Joanne Gilpin

      Joanne Gilpin

      Jul 28, 2018

      Goooooo Pammy!! Xx

      £10.00

    Pam Croft

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    About the fundraiser
    Pam Croft

    Pam Croft

    Bradford, UK

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