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Kate's Story

I'm 22 years old and was diagnosed with Lupus (SLE) at the tender age of 18, after two years of severe Raynauds.Naturally I was devastated to discover I had Lupus, as like most people, I had no idea what it actually meant. Reading medical books made the disease sound fatal so I had no idea what my future held.

I just about coped taking my A-Levels with the aid of steroids and then decided to work in Gran Canaria for the summer with my boyfriend. After the summer my condition took a turn for the worse, my whole body was stiff and I ached all over, I could barely move from my bed.

It was incredibly frustrating, I was very angry and depressed as even trying to tie my hair back caused pain and sitting on the toilet caused tears.

My family, friends and boyfriend were all great support but it is very difficult for people to understand you are ill when you look perfectly okay. At this point I was given intravenous steroids which worked miracles and I was so determined that Lupus would not change my plans, I actually took off around the world for five months only taking Prednisolone daily.

The climate actually helped me, but on boxing day morning at 5am (Sydney 2001) I awoke struggling to breath and felt as though somebody was continually stabbing me in the chest. I was admitted to St Vincent's hospital, Sydney, where I had numerous tests and they discovered Pleurisy and a connective tissue disorder, all connected with my Lupus.

My trip was cut short and I returned to the UK to St Thomas's hospital for two weeks where I had what felt like every possible test under the sun including lung scans, MRI scans, ultra sounds and a muscle biopsy. The staff were very thorough and confirmed my Lupus complicated with Mixed Connective Tissue Disorder (MCTD) and Myositus.

Although it sounds bad I was actually relieved as then I could begin controlling my pain and depression properly, although it took several months of trial and error to find a drug which suited me. I had intravenous Cyclophosphamide and Aziathiaprine but it was Methotrexate and Prednisolone that I am still on today.

Although the past few years have been an upward struggle I am finally getting on with my life, I have just returned from working in Greece for the summer and have made many more travel plans for the future. I have my good and bad days like any other Lupus patients, but my good days are particularly appreciated. Lupus has opened my mind and I've learnt that happiness is a journey and not a destination and I'm a strong believer that positive mental attitude is the key. I'm never going to let Lupus rule my life and am going to do what I can to make other people aware of this cruel disease too.

"This story was written in 2003 and Kate is has since changed her medication to Azathiaprine and Planquenil and is happily working full time as a business development assistant for Vestra LLP Wealth Managers in the city and living in Wimbledon with her boyfriend. Kate has the disease under control and is still raising awareness for the St. Thomas' Lupus Trust, as well as doing a sky dive whilst being afraid of heights and posing for a naked sculpture for Marc Quinns 'Chemical Life Support' Exhibition at the White Cube Gallery, her boyfriend is running the London Marathan dressed as a butterfly! "

Updated Jan 2009