Congenitail Hypatic Fibrosis, Varices, Portial Hypertention

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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  • 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!

  • 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

  • Hi,

    My son is 13 and he has 3 sessions of banding behind him. For how long have you had had banding done? Does it go on forever? Many thanks for your info.

  • Hi there. My son has congenital hepatic fibrosis, portial hypertention and varices. He was diagnosed when he was just 2 years old and he is now 10. He has enlarged liver and spleen and at the moment is in good health. We have been told this condition is extremely rare and he is lucky because his kidneys are not involved. Do you and your sister have enlarged stomachs. We were told that there was a chance that only 1 in 4 kids could contract the condition.

  • He is very lucky that he does not have his kidneys involved, it makes everything more different. Im so happy for you that he is in good health

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