Halloo,

I was diagnosed when I was just about 9 in 1977. I don't remember a huge amount about it but was in hospital in London for a few months and everyone was a bit surprised that I got through it. I was affected in my sinuses and nose and kidneys. I've no idea what drugs I was given other than a lot of pred (60mg for months, and I was pretty tiny to start with). I had various flares and hospitalisations throughout my childhood and teenage years and have been taking pred ever since. I've never come off the pred. I had a major episode in my late teens and early twenties affecting my eyes, sinuses, ears and lungs, although my kidneys managed to keep going. I spent my twenties mainly on pred and Imuran and had a sort of 'lightening strike' 10 years ago and lost my kidneys very quickly. Dialysis for 18 months and a transplant in 2000 and since then I've been pretty good. Disease has been active but controlled for the last couple of years (I have some mild symptoms but my bloods are clear) and am currrently on a teeny bit of pred with cyclosporin and Cellcept.

Life is pretty good and I work full time in a job I adore, having landed my first 'proper' full time job of my life working for a disability rights organisation after teaching part time for years. I hated teaching but, you know, it was a trade, which my parents persuaded me to qualify in because I can't rely on staying well for very long.

So, yes, it's not exactly a bed of roses but I reckon I've been very lucky for a very long time. It's lovely to have contact with other WG folk. It was a long long time before I had any contact at all, and I'm particularly interested in sharing experiences with others who were diagnosed very young or have gone through long term treatment. I'm beginning to fall apart a little bit, what with arthritis/cateracts and stuff, but I'm very happy at the moment. It's nice to be here.

Sarah