June 2009

When the going gets tough, the tough get going

Although I am a very sad person generally at the moment, on the surface I am, of course, functioning pretty well. But every morning I wake up and for that fraction of a second everything is fine, until I remember that we have a new normal in our family life these days. So yes, I [...]

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Eight words

He’s in a terrible mood: insomnia, bone pain in his feet, kidney pain and prednisolone rages are all combining this morning to make it, well, tricky is the least awful word I can think of to describe it. But if it’s tricky for me today, it’s an ongoing battle for him. As we drop off [...]

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FSGS genetic test results

The genetic results are disappointing. William has a genetic ‘abnormality’ on the gene that is responsible for the genetic form of FSGS and while they can’t say that caused his fsgs they think it made him ‘more susceptible’ to developing idiopathic (ie non-genetic) FSGS. More worryingly, because he has a genetic abnormality it means all [...]

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