Nigel has been unwell for a few months.
He has been in and out of hospital since the end of April 2017. Up until now they couldn’t find what was causing the problems he was having. He was being treated with steroids and strong immune suppression drugs but they only kept his condition stable.
He has recently undergone a second kidney biopsy which was clear but as they took the biopsy they mistakingly snagged a bit of tissue surrounding the kidney. Luckily they did as this showed up as an extremely rare condition called Erdheim-Chester Disease (ECD). This is an incurable disease but has been known to respond to a certain drug so he now has to have a chemotherapy drug but as this is hardly ever used due to the rarity of the disease, it is not funded by the nhs.
Nigel is trying to work after having 12 weeks off but has only managed a few mornings so far. His kidneys are only functioning at 20% at the last check up and he struggles with quite a few aspects of every day life. His pituitry gland is also affected which has led to diabetes insipidous. He also has lesions on his bones which is a characteristic of this disease.
Obviously as a family we are desperate to try and help him and so we are going to set up fund raising to either pay for or contribute towards the cost of the drug .
Anything anyone could do to help prolong his life would be wonderful and me and the girls would be forever grateful.
The wife (Paula)
- Emily Gray
- Co Op Thatcham
- Claire Farley
- Rachel Dalton
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