Hi all.... I'm new as is my 22 month old son who was just diagnosed with Congenital Hepatic Fibrosis. I am in Canada and seeking as much information about treatment, prognosis and support from others or their families with this disease. He has Portal Vein Thrombosis, Splenomegaly, Esophageal Varices to only name a few of the other medical issues he has.
Congenital Hepatic Fibrosis is a rare and very complex disorder. I believe the scope of your question is beyond the ability of the members here to address. Infrequently a physician does visit this board but we do have a Med Help Liver Transplant Board with an expert physician to answer questions. I will provide you with the link to that forum and I advise you to post your question there.
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