Vasculitis UK
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Anyone got dysplastic kidneys with Alagille Syndrome?

Hi,

My daughter has Alagille syndrome and we've been told her major problem is with her Kidneys. While they are working well now (she's nearly 2 years of age) they predict that she will go into kidney failure in her teens and need a transplant. Can they really tell that at this stage. Anyone in a similar position?

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I had never heard of Alagille syndrome until today! As I now understand, the main effects are usually on the liver rather than the kidneys.

I'm trying to find if there is a group for those suffering from it (or their family). Where does your daughter receive her care?

BW john

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Thanks 4 reply John. I'm in Ireland and apparently there is only about 10 kids with this condition here so looking further afield. Main organisation for this condition is in US but you can't post any messages at present on their site. Her liver appears abnormal on scan and the function is slightly off but not enough to do a biopsy at this stage. Kidneys are their main concern at the moment. Was just seeing if by chance someone had a kid in the same boat. Thanks again for your concern and I hope things health wise are good with you. M

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