Congenitail Hypatic Fibrosis, Varices, Portial Hypertention

Posted by Kemnay

28 Jan 2013

Hello my self and my sister have had this condition for years and have grew up with this I am now 34 and she is 33 if anyone would like to ask questions then leave them for me and ill get back to you . We are from Scotland Dundee and only 3 people have this condition here and we are not on any severe medication and live a normal life .

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McSousa

30 Jan 2013

Hello. My little boy has BA, so not the same disease as you, but he has PH and varices. He seems to be doing ok but I often wonder if it might hurt him (he often says he has tummy ache but it doesn't get in the way of being a lively 4 year old!) Have you had bands? I know that's sore for a couple of days after. He has his 4th endoscopy next week at King's so we're prepared for more bands. Thanks for sharing!

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Eleanorb

17 Feb 2013

Hi there I'd really like to get in touch with you about growing up with portal hypertension and varices. My three year old does not have a portal vein plus lots more besides, with lots of consequences. He has had three bleeds and have lost count how many bandings. Maybe I could direct message you on here or ask CLDF for your email..? Eleanor, Mum to Evan, South London x

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Congenitail Hypatic Fibrosis, Varices, Portial Hypertention

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