Practice A Patient’s Journey

Amyloidosis

BMJ 2011; 343 doi: https://doi.org/10.1136/bmj.d6326 (Published 16 November 2011) Cite this as: BMJ 2011;343:d6326
  1. Malvyn Benjamin, patient1,
  2. Simon Gibbs, haematology research fellow2
  1. 1Hendon, London, UK
  2. 2National Amyloidosis Centre, UCL Medical School, Royal Free Campus, London NW3 2PF
  1. Correspondence to: S D J Gibbs s.gibbs{at}ucl.ac.uk
  • Accepted 2 August 2011

After several months of nephrology and respiratory investigation, Malvyn Benjamin was eventually diagnosed with amyloidosis. Here he describes his experience of the condition and its treatment

I was diagnosed with amyloidosis in June 2010 at the age of 73. The sequence of events was interesting. I had been attending the hospital for many months, seeing consultants in the nephrology and respiratory departments, unfortunately to no effect.

For several months my ability to walk long distances had been impaired by extreme breathlessness: on a journey of 10 to 15 minutes’ duration I would have to stop 20 or 30 times to catch my breath. At one point, after such a walk, I collapsed in a synagogue—which was actually a good place to collapse, as I was surrounded by many doctors.

After routine blood and urine tests at my general practitioner’s surgery, my doctor telephoned me to say that she had spotted something and made an urgent appointment at the haematology department in my local hospital.

There, I was put through a battery of tests and was told my results would be sent to the National Amyloidosis Centre for examination. Of course, I had never heard of amyloidosis. Before going to the centre, I had a bone marrow test—not the most pleasant experience—and later, at the centre, I had various other tests, including an electrocardiogram and a full body scan.

When the results of the tests and scan came through I was told by the doctor at the centre that I had amyloidosis and that if I did not receive treatment for it I would not last beyond the end of the year.

My condition involves amyloid deposits in my kidneys, which were working at 20% of the normal rate, and in my heart. The heart wall was thickened and it is …

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