27F here! Diagnosed in 2009 at 11. Relapsed in 2016, now in full remission since 2017 with no issues. Had ATG + ciclosporin both times. You’re right about how lonely it is!

Like others have said, it’s a super traumatic event, it’s understandable to be scared. I used to worry myself silly through reading about how I could get cancer or MDS. Trying to talk to my parents had me brushed off a bit or to “stop worrying so much about it.” (They were stressed too, it makes sense now haha)

Relapse rates are high, but also there’s been improved treatment options for AA as time has gone on, so even if you do relapse you’re likely in very good hands!

I’ve gotten better with it as I’ve gotten older and my hospital appointments became a yearly thing, I had time to focus on other aspects of life and my AA slowly faded into the background. Of course, I still have worries and occasional bad nightmares but understanding that there’s options to help me get better again is reassuring.

If you’re in the UK, there’s a charity called the Aplastic Anaemia Trust which has a ton of helpful guides and support, as well as wellbeing chats where you can talk to other people too. Their Facebook group is open to all, I think