Yesterday I returned to Churchill College, Cambridge where I started my undergraduate career and medical training some forty years ago.
I always go back with mixed feelings, but this visit, which was to attend a conference about the value of exercise in chronic disease, was very much worth it. The conference, called Moving Mountains, was the brainchild of Shelley Surtees, Domestic Bursar at Churchill and Anny King, a Fellow and Tutor at the college, working together with Beat Your Demons. Between them they brought together a group of inspirational speakers, who live with chronic disease themselves, and who have used exercise as an integral part of how they manage their condition. The principles and conclusions they drew from their collective experience on the benefits of exercise can be generalised to all sorts of diseases and conditions and, in particular, listening to them I was struck by how relevant much of what they said was to people with sickle cell.
I thought I would return to the topic of exercise in sickle cell in a future blog but for now I would like to introduce you to some of the speakers at the Moving Mountains Conference. I hope that you find them as inspiring as I did.
Ben Coumbe is a third year medical student at Churchill, who spoke powerfully about his experience of depression as a student during his first year at university. The key words he used to describe how he felt at the time “darkness”, “quicksand”, “pain” and “loss of control” give you some idea of how he must have felt. He was helped by the support of his friends, but also by exercise, in particular by playing team sports, like rugby and rowing, on a regular basis. Stuart Jessop was another speaker, who has coped with episodes of depression throughout his life and who now works for the charity Mind. Over the years he has had a whole range of different treatments to help him, including many anti-depressant drugs and “talking therapies” but it is exercise, in the shape of regular walking, that really made the difference for him. Although he walks very day with his dog he has also completed some amazing walks including 3,300 miles around England and Wales.
Symptoms of depression are common in sickle cell disease and make coping with painful crises that much more difficult, maybe regular exercise offers a new, different way of tackling this?
Jonathan King and Nick Talbot both have cystic fibrosis and spoke about how they have used exercise to help them manage their disease. Cystic fibrosis has many similarities to sickle cell disease; both conditions are inherited, they both cause repeated acute admissions to hospital and both are associated with long term complications and shorten life expectancy. Jonathan is a junior doctor in London, who was diagnosed with cystic fibrosis when he was nine years old. His childhood was not too affected by the condition but, at the end of a year working with a charity in India a couple of years after qualifying as a doctor, he became very unwell and was admitted to hospital back in the UK, for six months. He was told that he needed a lung transplant if he was to survive. His lung function was less than 20% of that expected in someone his age and he could hardly walk to the end of his bed because he was so short of breath. One day he told his physiotherapist that he wanted to take part in a 10km run, instead of laughing at him his physio took him seriously and together they worked out a very gradual exercise plan. As his ability to exercise improved and he began to achieve the goals they had set together, his depression lifted and almost miraculously his lung function began to pickup as well, going from less than 20% to nearly 50% of that expected. He is now off the transplant list and planning to cycle London to Barcelona this summer.
Nick Talbot also has cystic fibrosis and has always been an outdoor type, into hill walking and camping. He remembers his first “tent” being an oxygen tent when he was a child in hospital with a chest infection. Despite the breathlessness caused by his lung disease he has carried on climbing mountains and in 2008 climbed Cho Oyo in the Himalayas, the sixth highest mountain in the world.
He is planning a trip to Everest this Spring and hoping to raise large sums of money for the Cystic Fibrosis Trust.
Finally, there was Johan Byran, who is also a doctor and has rheumatoid arthritis, diagnosed when he was 18 years old. He struggled through medical school, sometimes being unable to walk to lectures because of the pain and stiffness in his joints, but he has also benefited enormously from exercise by taking up running. He ran his first marathon in 2009 and has since completed 10 marathons in total, an Ironman Triathlon and a 100km run. His plans for 2015 include a “marathon a month” to raise money for Arthritis Research UK. Although he still has bad days, when it is difficult to get out of bed, and may have to have joint replacement surgery in the future, his experience of successful marathon running keeps him thinking positively.
Although Ben, Stuart, Jonathan, Nick and Johan are, on one level, heroes of the first order, in many respects they are just ordinary people struggling with chronic health problems whilst they attempt to study, work and live as normal a life as possible. They were united in promoting regular exercise for us all, but particularly for those with chronic disease, as a way of “overcoming adversity with achievement”. A message that came over loud and clear was that no one is too ill or too unfit to benefit from regular exercise, which brings us back to sickle cell. There was much at this conference which was directly applicable to people with sickle cell disease, so watch this space for some thoughts on exercise in sickle cell, what the benefits might be and how to do it.
In the meantime why not have a look at the website http://www.beatyourdemons.org or on twitter @BYDLiveLife.