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Hepatitis Autoimmune Community
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Avatar universal

Looking for treatment of cytomegalovirus hepatitis autoimmune haemolytic anaemias

My nephew is only 1 year old. Half a year ago he was diagnosed with cytomegalovirus hepatitis autoimmune haemolytic anaemias. Now he lives on a huge lot of medicines, of which there are some hormonic drugs. The doctor said that cases like his are very rare, and kids with similar diseases could hardly live beyond 4-5 years old. The entire family want to save this little kid, for whatever we can do. Therefore, I would like to know whether there are similar cases, how are they treated, and are there any medical organizations working on this disease?

If more details are needed, I can be found at ***@****.

Thank you!
4 Responses
Avatar universal
So terrible to be afflicted like this at the beginning of life. He's fortunate to have a caring family to do battle for him. I would call all the top medical centers and talk to their clinical trials group. Mayo Clinic, Cleveland Clinic, etc ... There must be something going on somewhere. Unfortunately rare diseases aren't generally spread out across the country due to the small number of availible participant pools, so travel might be inevitable.

Here's a web contact that I used myself to get in touch with several ongoing trials. Hopefully there's something you can find useful. Take care and we're all hoping that something wonderful happens! Many good research activities going on these days.

https://clinicaltrials.gov
Avatar universal
Thank you for telling me about the trial and your comforting words. Hope I could learn more good news from you. I would try my luck at the site that you offered. Thank you once again!
Avatar universal
Is his autoimmune attack on his red blood cells aggressive or are they able to maintain his stability with treatments? We might be able to help you understand some of this if you run into some non-communitive doctors. Some of our medical friends seem to lack the ability to help others gain a clear understanding as to what's going on.
Avatar universal
Up to now, the treatments works well, and his parents are trying to reduce the doses within the range that the doctor says fine. But it seems that he would never be able to live without medicine, esp. the hormonic drugs, which causes abesity and other discomforts. Thank you so much for being so considerate, it is true that some medical workers do not know how to communicate with patients properly. I feel so lucky to have a friend like you!
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