The letter

26th Aug 2010

We got a copy of the letter sent to Dr Salma from Dr Plilidis today.

When we saw her the other day she put our minds at rest because we had been thinking all sorts of nasty things. She said it could still be a virus, even though it had been tested for she was testing further for it. Or it could be some kind of syndrome which is very hard to diagnose or they simply might never know!

Anyway they letter runs through the blood test results, her HB was now at 10.3 (it had been 2+5wks since her last transfusion)

At the end of the letter it had the name of the 'syndrome' she had mentioned, its called Diamond blackfan anaemia. In short it is a very rare blood disorder. Only 700 people world wide suffer from it, around 125 of which live in the UK.
The sufferer doesn't make any or enough red blood cells.

Because it's so rare very little is known. Around 25% have a mutated gene but as yet its not known why the other 75% have it which is why its so hard to test for it.

Treatment is steroids to begin with (which can have some nasty side effects), if that doesn't work or if it stops working at any time then it would be monthly blood transfusions which again doesn't come with out complication. And failing that then its a bone marrow transplant!!!!!

So needless to say we're pinning our hopes on it being a virus! Which Dr Plilidis says is unlikely but still possible!

Reagan will have her none marrow test in 11 days on 6th Dec at St Georges.