I was 21 in 1967 – living in the Black Forest in southern Germany. Healthy and active, my only problem was often recurring tonsillitis to the point where I had my tonsils removed. Suddenly I started waking up with stiff, sore fingers. A visit to my GP resulted in him diagnosing arthritis and treating it with what seemed to be strong anti-inflammatories which made me nauseous and very tired, but did relieve the pain.

In 1972 I gave birth to my beautiful daughter – all through my pregnancy I was symptom free, but after the birth my health deteriorated rapidly. Extremely painful, swollen joints, frequent and very unpleasant bouts of pleurisy, and pericarditis followed. At one stage I was hospitalized for 10 months while physicians at the local University teaching hospital tried to determine the underlying cause. I remember very clearly one visit to my hospital room by the senior rheumatologist and his students – he described my symptoms to them and asked “so what disease is this patient suffering from?” One young student answered “lupus” – everyone, including the senior physician, smiled indulgently and shook their heads. I often think of that young man who was later proven to be so right!

I left hospital in April in a wheelchair – to be met by my tennis coach who presented me with a beautiful, state-of-the-art racquet I could not have afforded in a million years and said “I want you to play in the championship in September”. It sounded hopeless………….but five months later I played in the championship and won silver! My coach’s words and faith in me were truly inspirational!

Many years of steroids, anti-inflammatories, and other drugs followed without any noticeable success. But all through this time I was playing squash and tennis in the remission times. At one stage, probably the lowest ever, I was told that I would never reach the age of 40 and would need a wheelchair before then – they underestimated me!

In 1979 my relationship broke up and I moved back to London, UK. My new specialist at the University College Hospital in London immediately diagnosed systemic lupus and put me on hydroxycholroquine and some steroids for a few years. Then I was weaned off the steroids.

In 1981 I married the love of my life who provided me with more stability, support, gentleness and love that I’d ever dreamed possible (so important to any lupus patient) and my health improved gradually but consistently. I seldom need painkillers, never need steroids, but am still taking the hydroxychloroquine. I played squash until about five years ago, I am in the gym 3-4 days a week at 5:30 in the morning, and work full time as an Executive Assistant. Although my fingers are gnarled and not pretty, I can still work a keyboard better and faster than most other people in my organization.

The journey has been hard, painful and frustrating but, with the help and support of my husband and daughter, I triumphed and am in a place of peace, happiness, remission and am almost completely pain free. It takes courage – I initially had none, but I learned to develop it!

I am certain that I am a much nicer, gentler, more tolerant and understanding person with a lot more fortitude because of my journey with this disease.

I hope I can give hope to others.

Marguerite Caunt,
Executive Assistant to the Chairman & CEO
Concert Properties Ltd.

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