Hi there, my name is Saskia, i'm 28 years old and living in the Netherlands. Long story short: After some difficult years I was finally diagnosed with AIH in sept 2012. Now, nearly 10 years on, it has been a whirlwind to say the least, aspecially with COVID these last few years. I have been on various medications, had 3 liver biopts done to date, not to mention all the various scans, and I am also have regular checks for PSC overlap syndrome. Now been going fairly steady on a combination of tacrolimus and prednisole for a while.
I have been in a few forums and groups on facebook with Dutch patients, but lately feel the need to know more. I have missed getting information from younger people, getting to know how others have experienced AIH over the years, the meds we take, what it does to you not just physically but also mentally.
Hense I have singed up here, in the hope to get some more information and speak to more people who know what it is like to have AIH.
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SvanBergen
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Have you joined the UK AIH forum on Facebook? - over 3000 members of all ages from all round the world. Group is supported by some of the top doctors in UK who are working in the field of AIH research and treatment and all members are either AIH patients themselves or like me supporting loved ones with the condition.Private group so no one else on your feed sees what you post and you will be assured of a warm welcome and lots of support from people at all stages of diagnosis, of all ages as I said and who have experience with the whole gambit of medications plus many who have overlap syndromes.
Thanks I had seen it but wasn't sure if that one was the best to join. I have just put in a request to join the group. Will be good to read more on the matter. And a chance to see how things are done in another country!
They have a files section on the Facebook page which Doctors/Professors have contributed - they have regular seminar type gathering & they get the notes afterwards. Lots of folks on there who have been diagnosed as teens and young adults as well as older.
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