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PLEASE take the time to read Jim Randle’s experience of this rare disease. Jim is father to Jess and the husband of Julie- one of my dearest friends. 

Granulomatosis with Polyangiitis (until recently known as Wegeners Granulomatosis) is a rare type of vasculitis. Two people in a million are diagnosed each year in the UK. It is an incredibly difficult auto immune disease to diagnose. The cause is unknown, some doctors think it is triggered by an infection which causes the white blood cells to malfunction and to attack artery walls. This causes inflammation and in the region of 3000 different symptoms. In September 2003, in the space of one day I went from 0/10 in pain to 10/10, affecting both my knees and feet. Not what you might think would be a blood disorder! After several visits to my GP he was still unable to ascertain what was causing the pain. As the weeks went by, the pain spread to other joints. I also started to vomit at the smell of food; waking up at night soaked in sweat and my kidneys and liver started to fail.
At the beginning of November 2003, I was admitted to hospital, rapidly going downhill. Hospital doctors were literally scratching their heads as to what was wrong with me. Following some pressure from my wife, I had an ultrasound scan of my kidneys. A doctor thought I might have vasculitis and I was transferred to the Renal Department of Sunderland Royal Hospital. After a kidney biopsy, they finally confirmed it was Wegeners Granulomatosis.
Treatment involves suppressing the autoimmune system, initially with a course chemotherapy and prednisolone (Steroid). Once stabilised, the disease is controlled with immunosuppressant drugs and continued use of steroids. Wegeners is incurable and without treatment it can be fatal.
Most suffers will experience relapses during their lifetime, I am currently in the middle of my third. On each relapse it is back to square one, requiring chemotherapy and steroids etc.
Each time I relapse, I develop a new set of symptoms; lung damage; narrowing of the airways and sinuses; damage to nervous system in both legs below the knee and feet resulting in numbness; joint pain, nocturnal back ache, thickening of lung tissue, fluid on the lung, constant fatigue and breathlessness.
There are side effects of the cocktail of medication I have to take daily. The various immunosuppressants I take means I easily catch infections which takes an age to recover from. Steroids cause insomnia; weight gain; tiredness; osteoporosis and high blood pressure. Alendronic acid which is used to counteract the potential osteoporosis, causes bone thinning. This caused me to fracture my femur twice, resulting in me requiring surgery to fit a titanium rod from my hip to my knee.
Naturally I would like a cure to be found, but I would like there to be a greater understanding of what it is like living with Wegeners and how hard it is for my wife and everyone around me who support me. Without their continued support, I could not get by.
Jim Randle

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