FSGS is a rare kidney disease. It is a condition for which there is no proven treatment. Despite the use of cytotoxic agents, steroids, immunosuppressants and plasma exchange, approximately 50% of those who do not respond to medication progress to renal failure, half within 2 years and the majority within 5 years. Many sufferers will [...]

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“Will my son live to 20? 40?” I ask our nephrologist who just a couple of hours earlier had given us the diagnosis that we had been dreading most: FSGS.
He shrugs his shoulders. “None of us knows whether or not we will get run over by a bus tomorrow,” he says dismissively, a flicker of [...]

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So we are set for William’s biopsy. This entails an overnight stay (possibly two if he has any post-biopsy bleeding) and a general anaesthetic to make sure he stays absolutely still. Because a local anaesthetic and a five year old do not go together in such circumstances.
The hospital is a good distance away from here [...]

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The biopsy is just that: a biopsy. A nuisance but a relatively common procedure. It is the potential diagnosis that is worrying me sick. The paediatrician could not allay my fears when I asked what the statistical results were for the biopsy results in children but Dr Goggle is more forthcoming. He says things like [...]

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The last couple of weeks we have been to and from the hospital more times than I care to think about for William to be monitored and a couple of times when he has been really poorly. Each time we are there a minimum of three hours, usually with a fractious toddler and baby in [...]

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William is still not responding to the drugs he is being given for the kidney problems he is experiencing. The doctors vary between mild concern about this and a ‘wait and see’ attitude which could be mistaken for mild indifference if you weren’t looking carefully. But you can’t complain that the paediatricians aren’t optimistic at [...]

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