National Kidney Federation for Transplants

Wegner's Granulomatosis

AnnGarnett
Posted by AnnGarnett
17 Sep 2012
2 comments

Hi, I had a kidney transplant 18 years ago past May. I had the rare disease that is Wegners Granulomatosis. My kidneys started to fail when I was 11 but lasted till I was 16, I was on dialysis for 6 months and was very lucky that my first transplant was very sucessfull. SInce then my kidney has been great, my health is not fantastic and can only work part time. I got married last year and am trying for a baby at the moment. It is very rare for someone as young as I was to get Wegners.

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2 comments

Applecrumble
Applecrumble
12 Oct 2012
Hey,

I have Wegeners too. I was 18 when it was finally diagnosed as it had got so severe. But I was ill with constant sinus probs from when I was about 12. I had a transplant 11 years ago but it is starting to fail so am currently discussing going back on the list, and dialysis options.

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Jackie29
Jackie29
28 Oct 2012
Hello,
I have Microscopic Polyangiitis Vascullitis which has resulted in stage 4 CKD (18% function). I will require a kidney transplant.
Do you know about The Lauren Currie Twilight Foundation (LCTF) vasculitis charity? (thelaurencurrietwilightfoundation.org) This charity was set up by two grieving parents who lost their only child, Lauren, to WG in 2010. I run a LCTF Vasculitis support group in Bristol and there are many other support group both actual and virutal.
I wish you both well.
Jackie

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