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Diamond blackfan anaemia is an extremely rare blood disorder and it is characterised by an inability to produce red blood cells, these cells transport oxygen around the body and without them we cannot survive.
Sufferers of DBA require life-long medical care, they can be dependent on steroid treatment but many survive on regular monthly blood transfusions and in some cases bone marrow transplant is required. Regular blood transfusions will provide red blood cells but also leads to too much iron in the body.  Normally, the body uses the iron when making new red blood cells, but since a person with DBA doesn’t make any new red blood cells the iron just builds up and stores in major organs.  The patient then needs to receive further treatment to remove the iron, this can often mean they are attached to a machine which pumps medication into their body, this is usually done most days of the week for around 8-12 hours at a time, and this is also life-long treatment.

However the condition is managed, the majority of patients can have long term side effects and other major health problems. The actual cause of DBA is not clear and there is no known cure.

As this illness is so rare, affecting only around 125 cases in the UK and around 700 worldwide, most people have never heard of this condition, which makes it more difficult to raise funds..

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