My name is Sarah. I am 27 years old and live in the UK. I have just finished my PhD and am currently working as a university postdoctoral research fellow in pure mathematics. I also happen to have lupus, which has had a serious and disabling effect on my life. This website is about my experiences and story of living and struggling with lupus. All is not bad and here is a link to my other website where you can learn about the other aspects of my life; like my friends, my favourite pastime of tropical fishkeeping and a page about some of the loopy things that I have done occasionally. http://www.freewebs.com/loopys/
I have included links to websites where you can get more information about lupus. I have also included a page about the help you can get in the UK such as benefits, care and wheelchairs. I've also got a guestbook where you can leave comments about this site or my other "fun" site.
OVERVIEW: 
Lupus is a little known and misunderstood illness, despite the fact that it affects over 30000 people in the UK alone. It is an autoimmune illness, which means that the body's immune system mistakenly attacks itself. It affects mostly women with 90% of lupies being women. It can affect just about any part of the body, including skin, joints, muscles, kidneys, brain, nerves, heart and lungs. Because of this it has a bewildering array of symptoms and no two lupies will have exactly the same problems. For some lucky people the illness will be well controlled and they may enjoy normal lives in between flares. For others the illness will be very disabling, affecting every aspect of their lives and often preventing them from working. For others still, the illness will be life-threatening. But it must be said that with the use of steroids and immuno-suppressants, the prognosis has improved. While 40 years ago the 5 year survival rate was about 50%, today it is more like 90%, although slightly less for those with kidney involvement. Because of this variation in severity, lupies are often faced with people saying things like "I knew someone with lupus and they died" or the complete opposite "I know someone with lupus and they're fine". Neither is particularly helpful since the first is downright scary and the second is almost accusing the lupie of being a wimp!
DIFFICULTIES FOR LUPIES: 
One big difficulty that lupies face is that they may look very healthy. Most symptoms such as pain, disabling fatigue, neurological disorders, kidney heart and lung disorders are not outwardly visible. Add to that a facial rash which give the patient healthy looking pink glowing cheeks and you can understand that people are not always sympathetic and often will have no idea of the obstacles the lupus patient is having to overcome. Often just getting up and dressed is a major undertaking. Debilitating fatigue will mean that a lupie cannot partake in all the activities most people take for granted. They may have to give up sports and pastimes that were dear to them. They will have to miss out on important social events. They desperately need more understanding and support from friends, family and the general population.
LINKS: 
The following are links to sites where you can learn more about lupus or find support:
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