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Old Sat Jul 11, 2015, 09:12 AM
Jacqui Jacqui is offline
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Join Date: Feb 2015
Location: Liverpool, England
Posts: 5
My daughter has A.A and Autoimmune Hepatitis. Help needed!

Hi everyone

I really appreciate if anyone can help. My 13 yr old daughter was diagnosed with Aplastic Anaemia, Autoimmune Hepatitis and coeliac disease approx 4 yrs ago. She has been receiving medications for the Autoimmune Hepatitis ever since, however she now has CIrrhosis, with portal hypertension and oesophagael varices and splenomegaly

Her bone marrow has always been hypocellular, her counts have been reducing gradually over the yrs. They are now as follows:

hb = 9.5
White cells = 1.4
Neutrophils = between 0.5 to 0.9
Lymphocytes = 0.4
Platelets = 21

We are based in the UK. She is under many specialities regarding her conditions. They believe her immune system has attacked her bone marrow, her liver and her digestive tract, but cannot find any answers as to why.

Her haemotologist has now stated that although she needs to have a bone marrow transplant, they cannot do it, as it can affect the liver and with her liver already damaged then it's definitely no.

Her Hepatologist is holding out in not giving her a liver transplant as it too can have an affect on the bone marrow.

They don't think it's the Hepatitis associated Aplastic Anaemia syndrome as it has presented differently.

Anyways, what I really would like to know is if any of you know any Drs in the US who maybe experts in this field and maybe can help us. We have been told there is no one else in Uk with these problems and that she is a medical conundrum. Her Haemotologist is also trying to network around others Drs in hopes in finding help.

I would appreciate any thoughts/advice
Regards
Jacqui - mum to Olivia
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