KidneyKid

My little boy has FSGS, a rare and devastating kidney disease, and it has had a massive impact on our lives:

How to cope when your child is diagnosed with a serious, chronic disease

It’s six months since William was diagnosed with FSGS. I think it is fair to say that I cried every day for about five months and it is really only in the last month that I have moved on to the next stage of coping. I don’t know what the stages are exactly, only that [...]

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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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Relapse

William is relapsing. He had one day of remission. One day. What’s the point of one day of remission? Now instead of feeling hopeful that we are working towards remission we are just left with the thought that the ciclosporin is not going to work for him. Ten days ago his nephrologist called me. ‘His [...]

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Remission

Where have I been the last couple of weeks? Living life. My son is doing so much better – better in himself, more energy, about to go back to school. It’s been so long since he has felt like doing anything resembling normal everyday activities. We are making the most of it. And today we [...]

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My love/hate for Ciclosporin. But at this point mostly love.

I hardly dare say it for fear of jinxing it…. but… the Ciclosporin – the powerful immunosuppressive drug William is on – seems to be working. For the last few days his protein levels have come down to from 3+ to 2+ and now to 1+ on the dipsticks. Next stop negative we hope. Although [...]

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