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Pam Croft raised £1,645 from 21 supporters

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Closed 06/11/2018

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

    Weʼve raised £1,645 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
    Funded on Tuesday, 6th November 2018

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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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      6 months ago

      Pam Croft started crowdfunding

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      Page last updated on: 8/7/2018 21.35

      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

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      About Crowdfunding
      About the fundraiser
      Pam Croft

      Pam Croft

      Bradford, UK

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