I was diagnosed at the age of two with NS and I am now 25 and in the middle of a relapse. I was told I would grow out of this by 10 then 12, then 16 and I still have relapses. They are usually two or three years apart but sometimes can have a couple within a year. As a child until about 17 I would often have two or three relapses a year nearly every year.

I have tried a few different drugs but always went back to Prednisolone as nothing else seemed to do the trick. Most of my life I had a moon face and a big appetite as I was very rarely off them and I know they can have long term effects which I show some signs of. I am desperate to be put back on them at this moment in time though as I want to get better but until my test results come back I just have to wait.

NS has played a big part in my life yet it always throws me and upsets my life when it flares up, it is quite a tough and very unpredictable illness. I have never spoken to anyone with NS as it is quite rare so it was quite nice (in a strange way) to have read some of these stories and to know there are other people going through the same thing.

I feel for anyone with NS, it is a very stressful illness and yes there are treatments but they come with side effects, which can be unpleasant. Despite this illness I have lived pretty much a normal life and have two healthy children, so its not all bad.