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SUSAN HOYLE raised £1,250 from 39 supporters

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Closed 07/01/2019

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£1,250raised of £10,000 target by 39 supporters

    Weʼve raised £1,250 to To help fund potentially lifesaving medical drug treatment after being denied funding by NHS England

    cornwall uk
    Funded on Monday, 7th January 2019

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    Story

    Im Susan Hoyle, 41, a chartered physiotherapist in desperate need of help to try raising at least £10,000 to fund a year's potentially lifesaving medical treatment. I have a rare disease Pansclerotic Scleroderma & it has had a catastrophic effect on my body causing multiple problems & fibrosis to grow in my body destroying the joints/muscles, damaging nerves/blood vessels & causing severe deformity/stiffening & severe pain as it progresses. I have already lost almost all the movement in my right knee, approx 60% of movement in my left knee &,caused major functional problems in my left arm/hand & stiffening/loss of movement in my hips/pelvis/back. The fibrosis at/in my pelvis & I am losing the ability to stand up straight, walk safely with my crutches & use my wheelchair. I do everything I can to help myself & stay as independent as possibIe but without a chance at new treatment Im at risk of the disease becoming systemic & damaging my major organs. If the progression of the disease continues at its current rate I may only have a few years before I lose everything. My fantastic medical teams in London & Cornwall have exhausted mainstream NHS treatments but have been unable to control the disease progression & without new treatment my life is at risk. But my illness IS TREATABLE. there is one last treatment drug ABATACEPT recommended by my medical experts and known to help this type of condition which in my case has the potential to halt the disease progression & improve my current mobility & independence and reduce the amount of pain I am in everyday. The drug is approved in the UK for another condition so you would think that it would be assessable to me when recommended by my expert medical team. Since June 2017 my doctors, MP & I have been battling NHS England but have been denied funding There is an urgency in getting this drug started as im deteriorating rapidly, Im not a lost cause, have life in me & want a chance to live that life to the fullest.

    Updates

    15

    • SUSAN HOYLE1 year ago
      SUSAN HOYLE

      SUSAN HOYLE

      1 year ago

      Im updating again as ive not posted for a little while as ive been in hospital for surgery on my left arm and hand as the fibrosis had tethered my tendons down causing lots of pain and loss of movement. Despite complications resulting in three operations im back home and recovering and so far the outlook is promising as its kept me able to use my crutches and wheelchair so that I keep hold of what independence I have left. Thanks for all the donations as every one is a step towards treatment I so desperately need.

      Share this update to help us raise more

    • SUSAN HOYLE1 year ago
      SUSAN HOYLE

      SUSAN HOYLE

      1 year ago

      Just a quick update. I've now reached over £2000 thanks to a number of private donations. I'm continuing to fight for this drug and I want to thank you for your support.

      Share this update to help us raise more

    • SUSAN HOYLE1 year ago
      SUSAN HOYLE

      SUSAN HOYLE

      1 year ago

      Thank you so much for all your donations. Whether friend or strangers every donation is appreciated so much. I stand such a good chance with this new treatment and all your help is getting me closer to it.

      Share this update to help us raise more

    2 years ago

    SUSAN HOYLE started crowdfunding

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    Page last updated on: 8/28/2018 12.13

    Supporters

    39

    • Servane Trefusis

      Servane Trefusis

      Aug 11, 2018

      Hope your fund continues to grow and the treatment is a great success! LoveNicholas and Servanexx

      £100.00

    • Anonymous

      Anonymous

      Jun 16, 2018

      With best wishes, and pray you receive this treatment and that it will be a success for you. I have scleroderma too, but mine is not severe and my heart goes out to you.

      £10.00

    • Servane Trefusis

      Servane Trefusis

      May 6, 2018

      Good luck with the fundraising. Love, Nicholas and Servane Trefusis

      £100.00

    • Anonymous

      Anonymous

      Apr 30, 2018

      We are rooting for you. Best of luck

      £300.00

    • Anonymous

      Anonymous

      Apr 19, 2018

      Hope this helps towards your total

      £100.00

    • Anonymous

      Anonymous

      Apr 18, 2018

    • Anonymous

      Anonymous

      Apr 15, 2018

      keep going

      £10.00

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    About Crowdfunding
    About the fundraiser
    SUSAN HOYLE

    SUSAN HOYLE

    cornwall uk

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