Michael’s story

Michael’s story begins in 2007 when he was suddenly taken ill and eventually was diagnosed with Haeophagocytic Lymphohistiocytosis. He shares his experience and why he joined the NIHR BioResource. 

5 October 2007

“A few weeks away from early retirement after 40+ years in banking, I returned home from work feeling extremely unwell with what seemed a severe case of influenza, spending the whole weekend resting with little or no appetite. Thankfully, the practice sister at my local Health Centre recognised my symptoms as something more than just influenza. After two blood tests, I was sent to Northwick Park Hospital, Harrow where I was admitted into their Infectious Diseases Unit on 10 October 2007.”

HLH Diagnosis – 10 October 2007 – 19 October 2007

“My time at Northwick Park was uncomfortable and desperately depressing. Tirelessly working to diagnose my condition, the medical staff tested me for over 30 diseases before finding the answer. With organs failing and little hope left for my survival, one registrar recalled a discussion on HLH from his university days. Subsequent bone marrow examination showed the presence of aggressive macrophages, confirming an HLH diagnosis.”

Hammersmith Hospital, Haematology Department – October 2007 to November 2007

“Transferred to an isolation ward at Hammersmith Hospital, where one doctor had some experience in treating HLH, I was prescribed oral and intravenous antibiotics and cyclosporine, to shut down the immune system, there being no time for chemotherapy or bone marrow transplant. I gradually recovered from stupors, malaise and melancholy, having lost around 5 stone in weight since the first symptoms appeared.

“As my organs began to function more effectively, steroids were prescribed to help. Over the following weeks, the cyclosporine and steroids dosages were carefully measured and adjusted to ensure no adverse reaction. Very soon the doctors became more confident of my recovery and I was allowed home to continue treatment as an outpatient. All this sounds very straight forward – but it was an extremely traumatic experience with many setbacks.”

Recovery at Home – Outpatient

“I returned home in a weak condition. The drugs were carefully regulated. Antibiotics were withdrawn, and cyclosporine and steroids steadily reduced. Ongoing blood tests reduced in frequency until I was free of all medication. In October 2008 I moved to Cornwall with my wife, having missed my retirement celebrations!

“I was hospitalised again in 2010 with a “Pyrexia of Unknown Origin”. Treated for Tuberculosis (TB), this was followed by steroid induced diabetes and a diabetic coma lasting several days. Melancholy, lethargy, insomnia are all part of my life and there are suggestions that I suffer from post-traumatic stress disorder (PTSD). I have made progress and learned to live with the way things have changed. Being very ill for three years immediately following retirement has taken its toll.

“I joined the NIHR BioResource Rare Diseases Study as a way of making a small contribution towards improving awareness of rare diseases, especially HLH. I was a lucky survivor, treated by the most dedicated, committed and determined medical staff imaginable. Only by searching out better diagnostic and treatment processes, and by spreading greater understanding, can more lives be saved.”

Find out more

If you would like to find out further information about the NIHR BioResource, please click the link below, to find the person to direct your enquiries to.