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Vasculitis HSP C Iga Nephropathy Awareness & support raised £395 from 14 supporters

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Closed 25/09/2018

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£395raised of £3,000 target by 14 supporters

    Weʼve raised £395 to Help with medical equipment to ease the burden living with long term rare illness & raise awareness of Vasculitis HSP & C igan Nephropathy

    Derbyshire, United Kingdom
    Funded on Tuesday, 25th September 2018

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    Story

    I suffer a rare condition called Vasculitis there are many forms of Vasculitis & there is little known of the condition. At present there is no known cause and no known cure and research and awareness into the condition is lacking.

    Vasculitis is a rare auto immune disease which causes the walls of the blood vessels to become inflamed (swollen).

    It is a serious condition which can lead to tissue damage limb loss organ failure and death this disease almost took my life.

    Henoch-Schönlein Purpura (HSP) is a Systemic Vasculitus which can affect the skin, joints, bowel and kidneys. It is also known as IgA vasculitis (IgAV)

    Inflammation of the blood vessels (known as vasculitis) caused by IGA VASCULITIS mainly affects the nose, sinuses, ears, lungs and kidneys, although other organs can be affected too, including the brain, eyes, skin, nerves, heart and bowels.

    The true cause of HSP is not yet known. However, in IgA nephropathy there are differences in the make-up of the IgA antibodies in patients that give them a tendency to get stuck in the kidney. It is believed that similar abnormalities may exist in HSP.

    The rash is caused by inflammation in the small blood vessels of the skin which can cause bleeding into the skin. It is often felt as small bumps (palpable) and is a reddish/purple colour (purpura). In severe cases it can cause large areas of raised purple patches skin ulcers tissue death and loss of limbs.

    My Diagnosis is of Henoch Schlorein Purpura HSP and IGA Nephropathy. Due to this, last Xmas & New year I spent in hospital after i very nearly lost my life, in the process I lost my partner & also thought I was to loose my foot thankfully that was saved but now have foot drop, severe back problems kidney, liver failure & every week is spent at another doctor or specialist appointment. Research and drug treatments are still being trialled for this condition and awareness trying to be raised

    There was only so much medically hospital could do and upon discharge I was nearly put into a care home, but at 34 years of age it was said I was too young ..I almost lost my home, my daughter, my life, This illness took everything.. I was eventually sent home with my own carers, where I existed in my small living room on a bed with a commode and carers and nurses at a loss of how to cope with my condition.

    I am asking for help with donations as I no longer have any help with social care who were only there for a short time... I now have to pay for care, home-help and there is no funding for medical equipment. Moving home is not possible therefore a stairlift / downstairs walk in shower would make life so much easier. I have an Autistic daughter too who has health problems she is the main reason I keep fighting and gives me strength :) Thankyou for reading I hope to raise awareness of my condition and help others where I can even if it is just to share my journey. I hope to make a blog and write my story but it is still very traumatic I hope to one day be able to get my story out there properly thankyou so much for your support x

    THE GENTLEMAN ABOVE IS A FRIEND I MADE ALONG THE WAY WHO I VISITED IN THE SPLINT WORKSHOP WITH O.T AND PHYSIO :)

    THE PHOTO ABOVE IS OF MY LEGS FROM THE ATTACK OF THIS AWFUL ILLNESS

    Thankyou for reading

    Support & information can be found via the link below http://www.vasculitis.org.uk/about-vasculitis/what-is-vasculitis

    Updates

    1

    • Vasculitis HSP C Iga Nephropathy Awareness & support 4 months ago
      Vasculitis HSP C Iga Nephropathy Awareness & support

      Vasculitis HSP C Iga Nephropathy Awareness & support

      4 months ago
      Update from the Page owner

      Share this update to help us raise more

    1 year ago

    Vasculitis HSP C Iga Nephropathy Awareness & support started crowdfunding

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    Page last updated on: 8/20/2018 2:19 PM

    Supporters

    14

    • Morgan Baker

      Morgan Baker

      Oct 7, 2017

      £25.00

    • Sanjay Bhatt

      Sanjay Bhatt

      Oct 5, 2017

      I am deeply saddened to hear what you and by proxy your family are going through during this difficult time. Our thoughts are with you. Chin up, stay strong & continue to fight xx

      £100.00

    • Allan Barr

      Allan Barr

      Oct 2, 2017

      £30.00

    • Anonymous

      Anonymous

      Oct 2, 2017

      Our thoughts are with you and hope you reach your target soon xx

    • Karen Currie

      Karen Currie

      Oct 2, 2017

      Keep strong hun. X

      £50.00

    • karen spice

      karen spice

      Oct 1, 2017

      £10.00

    • Amy Groupman

      Amy Groupman

      Sep 27, 2017

      £10.00

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    About Crowdfunding
    About the fundraiser
    Vasculitis HSP C Iga Nephropathy Awareness & support

    Vasculitis HSP C Iga Nephropathy Awareness & support

    Derbyshire, United Kingdom

    As well as suffering with Vasculitis I suffer with FND which is also a problem with the nervous system sending & receiving signals I have suffered this 11 years causing seizures links http://www.vasculitis.org.uk/about-vasculitis/what-is-vasculitis https://fndhope.org/

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