Mother to Lewie who has AIH and ultrative colitis

[Lewiesmummy2009]

Hi I'm just looking for some information on this disease am worried for my boy an just want to speak to others who have this disease am worried for his future and a bit of a mess doctors haven't really been clear enough with me an I have a lot of worries

[mormer]

Hi lewiesmummy2009. I have a daughter who has AIh, she was diagnosed at age 9, she is now 13. If you would like you can private message me and I can give you my experiences with this illness. The most important thing to know right now, is that my daughter is stable, yes she still takes medications, but she attends school and is able to do most things teenage girls like to do. Take care xxxx

[Lewiesmummy2009 in reply to mormer]

Thankyou my Lewie has recently had to stay in hospital to have steroids and other medications or his liver would have failed no doctor has sat me down an gone threw in detail about his condition I had to look everything up online be been reading stories of other people with the disease an I'm terrified for his future one girl had to have a liver transplant head is just a mess wish he didn't have this

[courtney1985]

As you know your diagnosed very young but I have all my paper work on the disease that I have. I don't fully understand it all, what I do know I wasn't born with a bile duct and so I had no way of filtering and riding waste so it becomes toxic of course and back up in are liver and can sometime leak out, which can be even more harmful, so I had a kasai procedure to correct my issue and have been fine ever since and I'm 30.

[Penguin8]

My daughter Kayla who is 7 was diagnosed with AIH & PSC in December 2015, I have the same very worries you probably do and I stress at everything so you are not alone, I have found the FB page Liver Mums extremely supportive and helpful if you have access to FB I certainly recommend it.