Weʼre raising £3,000 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
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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
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Vasculitis HSP C Iga Nephropathy Awareness & support started crowdfunding
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Oct 7, 2017
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
Oct 2, 2017
Oct 2, 2017
Our thoughts are with you and hope you reach your target soon xx
Oct 2, 2017
Keep strong hun. X
Oct 1, 2017
Sep 27, 2017
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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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