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I was diagnosed with Lupus right at the start of my first year of university although I think that the actual disease started a few months earlier when I was revising for my A-levels. I was desperate to get into Cambridge at the time and although I was doing well, the thought of exams made me very anxious and I was very stressed and panicky for months... I think that this may have triggered the disease but I couldn't have known that at the time.

After the exams were over I felt exhausted and went on holiday to visit relatives in Eastern Europe. It was late summer and very sunny and hot and that's when the rash really started. Now that I have gone over the old photos I can see that I had the beginnings of some kind of rash before but during the holiday it spread over my face and really became obvious.

I was also inexplicably swelling, especially my legs, but apart from that and the rash I felt fine. My parents and I assumed that it was some kind of sun allergy but after a few weeks it didn't go away and I got nervous and went to see the GP. She recognised the rash and suspected lupus but sent me for blood tests and to see a dermatologist for a second opinion. At the hospital they discovered that I was losing a lot of protein in my urine and took more tests.

It was at this point, Oct 2002, that I set of for Cambridge. I was very happy, if a bit tired, and I had heard nothing from the doctors. Then, towards the end of October I got a call from a local renal clinic and a nice but concerned lady asked me if I could come down and see a consultant the next day. This was a bit worrying as it usually takes some time to see a specialist but I said 'sure' and went along. That was the day that the consultant told me that I had SLE+Nephritis which explained why I was swelling so much, it was due to water retention caused by low blood protein. I had to go into hospital the next day. I was 18 and I was devastated. I had always looked after myself and didn’t smoke, drink, take drugs or anything. I kept thinking ‘why me?’ and I could almost see my life changing for the worse in the future.

The day I had to go into hospital was terrible. I woke up with a swollen face and feeling exhausted and looked really ill. My parents had driven down to support me that day and when they came in I could see that my father was scared, that was the worst thing, I had never seen him really scared. In the hospital I was put on the renal ward and given intravenous steroids and immunosuppresants and more pills than you could shake a stick at. They were trying to limit the damage to my kidneys.

The main medication that I took was CellCept and Prednisolone although they also gave me something for cholesterol and blood pressure. I was terribly depressed and couldn’t stop crying for days. The overwhelming feeling was that of betrayal, I really felt as if my body betrayed me somehow…

The university offered me the chance to miss a year due to illness but I’m glad that I didn’t take it up. I made friends and the studies gave me something to focus on so that I didn’t dwell on my lupus every day. The first year was very hard, I was tired and didn’t have much energy for anything other than studying. I remember needing to take naps after lectures so that I had enough energy to could cope with the work. However, I gradually got better.

At the end of that year I went to visit some friends in Switzerland and hiked in the Alps. It was a real turning point for me as I realised that I wasn’t this weak, broken person that I felt like. I could do things, my body was still strong. I was told that at this point my SLE was improving and that my ‘illness’ had now become more psychological than physical.

For years I avoided talking about my SLE or reading or getting in touch with other sufferers (my way of coping really) but now I have come and read other people’s stories I realise how lucky I have been. Although the steroids and CellCept triggered a series of recurring attacks of appendicitis which was only diagnosed and treated after 2 years (!), I have never had any pain or involvement of anything other than my kidneys, I was put on drugs that I responded really well to and had minimal side effects, I was diagnosed within 2 months of first seeing my GP and didn’t suffer any permanent kidney damage. Most of all, I had a fantastic consultant who supported me mentally and physically all the way. He and my boyfriend really gave me the strength to keep going and try new things and made me realise that I can live a fulfilled life, lupus or no lupus.

It’s been 6 years now since I was diagnosed. I finished my undergraduate degree with a 2.1 and am now in my final year of a PhD. I am now happily married (to that same boyfriend) and we plan to start a family soon with the full support of my doctors. I feel well and apart from a few grumbles I haven’t had another major flare since my initial diagnosis. My condition has improved to the point where I have been taken off all medication since January this year. I hope that this will be permanent but if it isn’t then I don’t think I’ll be devastated, I’ve realised that I can live with my SLE and still have a good life.

I hope that my experience will give hope to other people that have been diagnosed with SLE and are now undergoing treatment. When I was being treated I was terrified of what I read about SLE (this is why I stopped reading about it!) and assumed that things were never going to get better, that I would get pain or brain involvement or be crippled, or that something else terrible would happen, but it didn’t. I really wish that six years ago I had read a story like mine, where the worst doesn’t happen, it would have made it just that little bit easier to hope for the best.
 

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This is a very encouraging post. Thank you so much for making it and I wish you really well with the plans for a Baby!
x Lola
 
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