Being diagnosed in 2015 with a rare progressive bone marrow disorder called Myelodisplasia (MDS) was a shock to say the least. Like most people my immediate response was to go to Doctor Google where I discovered, amongst other things, that the only “cure” is a bone marrow transplant, that the condition affects only 3 people in 100,000 and that, on average, people live about 5 years from diagnosis. However, these are averages and for the luckier patients the progression can be slow and symptoms successfully managed for many years. 

So far I have been lucky in that my disease has progressed slowly, and although my anaemia has got steadily worse over the last 4 years it is only recently that I have had to start therapy to help with this. Even with therapy my haemoglobin levels are about 25% below the level that would be considered normal for a man my age. 

I consider myself fortunate in that I still have a great quality of life – I can ride my bike 4 or 5 times a week (albeit a bit slower!) and am lucky to have been able to cut down on work and take more holidays. I am also lucky to have great support from my family, friends and work colleagues. 

MDS patient support group does what it says – offers support to patients, carers and family of MDS sufferers as well as raising awareness of this rare condition. Any help you can give would be greatly appreciated.