And a little about me ...

A little about me: I was diagnosed with lupus over 20 years ago. For me, it came as quite a shock as I’d been active and healthy with none of the aches and tiredness that many lupus patients experience years before diagnosis. I think the lupus was dormant, waiting for something to kick start it. I am sure it was the fertility treatment I underwent that was the catalyst - although the medical profession at the time said it was unconnected.

I had never heard of lupus (neither had my then GP) and as this was pre-internet I headed off to the local library to look it up. What little I could find about it scared me witless - the following day, I made my will!!

Cut to 20 years and I’m still very much alive and kicking. My lupus is reasonably under control and although it has changed my life, it hasn’t ruined it. I still do things ‘healthy’ people do - I just do them a little differently and a little more slowly!!

I got involved with my regional group of LUPUS UK because I was so frustrated that diagnosis and treatment and more especially, understanding of lupus, hadn’t moved on much since I was first diagnosed. The work of LUPUS UK and the dedicated support of it’s members has improved things enormously, but there is still a long way to go. However, I think the day when I am not met with blank stares when I say I have lupus is getting a little closer!!

[momo_special]

A lot of people still ask me what Lupus is... I've got my brief reply down to a fine art but they nod and it prob never crosses their mind again. I was diagnosed 3.5yrs ago and even then I struggled to find information that didn't result in me falling apart and crying, literally thinking that I would die young from this terrible disease. Information is better and I'm much more controlled in what I read and only use trusted sites and even avoid some of the sites from other countries.