Ipswich man tells how he was given six months to live due to rare blood disease
PUBLISHED: 07:29 13 July 2019 | UPDATED: 11:37 13 July 2019
Aplastic anaemia only affects one in 500,000 people - but more needs to be done to raise awareness and offer support in Suffolk, says one 60-year-old sufferer.
Martin Roberts, from Claydon, says the rare blood disease stripped him of his life when he was diagnosed three years ago, and wants to ensure that other people don't go through the same thing.
'I was given six months to live'
The painter and decorator developed blood blisters in his mouth only to collapse a few weeks later while on shift at work - being rushed to hospital where he was diagnosed with very severe aplastic anaemia.
The keen motorcyclist underwent copious blood transfusions and spent most of his time in hospital either in Ipswich or at Kings College in London - where he was put on an American trial drug in the August.
A few months later he developed a fungal infection in his chest - and he was taken off of the drug and told that the only option left was a bone marrow transplant - a dangerous operation for someone of his age.
"I was given six months to live," explained Martin.
"The drug hadn't worked and it was my only hope - but I was warned that the operation for the bone marrow transplant was a huge risk because of my age, despite being physically very fit."
Luckily they found Martin a donor, as unlike in 21-year-old Annie Lovegrove's case which we covered last week, no one in Martin's family would have been a suitable donor.
Martin took the risk and had the transplant after the hospital found him a match - someone nearly half his age.
He said: "If they hadn't found me a donor I wouldn't be here today, but there are never any guarantees with the treatment."
The disease, which causes a deficiency of all blood cell types, can happen over time or very acutely.
Despite it becoming more common, the rare illness is still highly complicated, and sometimes there is no idea of what causes it and the symptoms can be easily mistaken for other illnesses.
"It's a horrible disease, and they say it is going to take me at least five years since I was first diagnosed to fully overcome the illness and be back to my normal self," added the 60-year-old.
"It is a debilitating disease - I couldn't work, I couldn't wash myself and I was completely depressed."
Common symptoms of the illness include extreme fatigue and bruising, due to the low numbers of platelets which reduces the blood's ability to clot.
Another symptom is anaemia, which is caused by the low red blood cell count - meaning that oxygen is not getting to the muscles as normal, which can make the person lack energy and become tired more quickly.
Martin, who is a keen fan of the gym, lost more than three stone during his illness as he was unable to eat - dropping from over 13 stone to less than 10 stone within a few months.
When he was first diagnosed Martin says he "couldn't do anything" and spent more than six months in hospital.
Since having the treatment he has been cared for by his wife in their home in Claydon, who says he is getting much stronger.
Martin wants to encourage people to notice the symptoms and says he "would never wish anything like that on anyone".
He admits: "I had never heard of the illness before, people just don't know what it is because of how rare it is."
Since leaving hospital Martin has become more aware of what he comes into contact with - including recognising a range of foods that he should stay away from.
He said: "Any virus I get could kill the new bone marrow, so I am much more aware."
Martin says he is pleased he took the risk of the transplant - and hopes that he will be able to return to the gym in a few years time.