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

Weʼre raising £10,000 to To help fund potentially lifesaving medical drug treatment after being denied funding by NHS England

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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.

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Updates

14

  • SUSAN HOYLE3 months ago
    SUSAN HOYLE

    SUSAN HOYLE

    3 months 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.

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  • SUSAN HOYLE4 months ago
    SUSAN HOYLE

    SUSAN HOYLE

    4 months 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

  • SUSAN HOYLE4 months ago
    SUSAN HOYLE

    SUSAN HOYLE

    4 months ago

    Helping to keep my fighting spirit going is a number of people, I will mention a few here. My medical team, the Merlin Centre who are helping me keep as much strength in the muscles that are still working and Sea Sanctuary who are helping me cope mentally with all the challenges and changes I am facing. All have been incredible in treating me, supporting me and helping me manage a complex condition. I can't put into words how grateful I am to people whether strangers or friends who have given me a part of their time to help me.

    Share this update to help us raise more

7 months ago

SUSAN HOYLE started crowdfunding

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Page last updated on: 8/11/2018 4:33 PM

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

SUSAN HOYLE

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About the fundraiser
SUSAN HOYLE

SUSAN HOYLE

cornwall uk

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