"My lupus story"

About: Addenbrooke's Hospital / Rheumatology

(as the patient),

I have lupus. I have been diagnosed for around 5 years.

First of all they thought I had a stroke but then I was moved to Addenbrookes hospital and that is where they found that it was lupus after so many tests, lumbar punctures to find out what was wrong, as I had no signs, no rashes, tiredness or anything like they say I would have.

I just had movements and fidgeting all the time, I went through so many medications, not even cyclophosphamide would work. So in the end I had to have my blood taken out and cleaned and put back in again and that was the only thing that actually calmed it down.

I was that sick from cyclophosphamide I will never have it again, if it was the last thing to resort to maybe.

I'm still not 100% now, I never am and don't think I ever will be. I have been depressed and all sorts, I couldn't even go to school as I couldn't write or hardly walk.

I am on the road to recovery I think.

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Response from Lee Bennett, Head of Patient Liaison, Cambridge University Hospitals NHS Foundation Trust

Thank you for sharing your story. It sounds like it took some time to reach a diagnosis but we are pleased to note that you feel on the road to recovery. Please accept our best wishes on this journey.

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