Child diagnosed with super rare condition - need a hand hold

[NameChangeForMedicalConfidentiality]

I’ve name changed for confidentiality as the condition is so rare it could identify me to anyone that knows me in real life.

My daughter has just been diagnosed with a super rare autoimmune disorder that affects 0.001% of children. It’s called Granulomatosis with Polyangiitis, never even heard of it before this.

She is having treatment in a specialist hospital right now and is thankfully responding well but I am struggling with the the thoughts of how we are going to manage this long term. She will have it for life now and the treatment is to suppress her immune system so she’s at risk of infections etc.

They say most children go into remission but it can flare up again in the future and her type is the one most likely to flare up so she’s likely to have further issues with it.

I don’t know how to cope with an immunocompromised child, how do you manage school, seeing friends, living a normal life and not be an absolute wreck with the anxiety of it?

We are avoiding calling her infusion chemotherapy at the moment to not scare her but at some point she’s going to realise as she’s a teenager, she’s already an anxious teen and she’s already struggling with being diagnosed with this and thinking ‘why me’.

There doesn’t seem to be anything in the way of support groups etc. again with it being so rare, and the only one I found is for adults as it’s even rarer in children.

There is a 30% chance she will need a kidney transplant in the future and I’m already worried about that. I feel scared about things that haven’t even happened yet and might not happen.

She is on 15 different medications and the side effects are awful for her. Some are only short term thankfully but she will be on at least 10 of them for a year or two, until she goes into remission, and at least 4 of them for life.

It’s just floored me that last month I had a perfectly healthy child and now I have one with a very complex medical condition. It feels so overwhelming and I just want to wrap her in a bubble and keep her away from any risks but I can’t.

I’m panicked because she missed her MMR booster due to being unwell and now she can’t have it at all as it’s a live vaccine and not safe for her so she’s not protected from these. I’m panicked that one of the medications she is on is brand new and she’s only the 3rd child that has been given it (under her specialist hospital) so what if there are unknown side effects that could cause more issues. I’m worried that this is so rare that medical staff don’t know how to deal with it and when she is back home the GP or local hospital may make mistakes due to not understanding it. Everything just feels terrifying right now and I don’t know how to get myself out of the spiral.

Primary were amazing but I absolutely get your concerns about high school.

I dont really want to out too much info here as its outing. My if you wanna drop me a private .message I would be happy to chat and support.

They said she can’t have any while on her current treatment but in a year or so she’s can have none live ones.

I sort-of have, but not in a serious let's sit down and discuss this sense.

It's been a case of "You need to have your eyes checked every year" since he was 4, then "One of your legs is longer than the other so we need to get some surgery done to help your foot grow properly". I have mentioned the word Neurofibromatosis in general conversations about how we all have medical things we need to deal with (as in, Grandpa was a diabetic, that sort of thing) and he took that in but wasn't interested. I guess I'm taking a slowly slowly and needs-must approach. It's a fucking scary condition to take in all at once.

Sorry to derail OP!