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[quote=Anonymous][quote=Anonymous]OP, how much is this disease going to affect her adult life? Is this something she is going to grow out of? Will she be able to hold down a full time job with frequent hospitalizations? Might she be a person who is on long term disability? Can she manage going away to college without you to help navigate her health issues? Sorry for the barrage of questions, but what is she going to do about her health?[/quote]

Her disease is incurable, but not terminal (at least not at her stage, and we keep it under control and not advancing by having access (thank god) to NINE specialist teams who make sure it stays that way.  But its not going away.
If she can keep it under control, she will have hard times, but plenty of people juggle it and hold down jobs, etc.  Disability is a possibility if her disease progresses.  I'm hoping it never gets to that.

Over the next 2 years, in order for her to move away to college, she would need to manage her schoolwork on her own (one struggle) as well as managing her disease on her own.  And honestly she is much better at managing her disease. She has a very complex medication routine, but she manages it all on her own.  She would definitely need to be close to a national medical center, and I would feel better if she was within a few hours drive from us.

Thank you for asking.[/quote]

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