To wish my birth mum hadn’t told me that I have a 50% chance of inheriting mitochondrial disease...

[NooNooHead]

... but that it explains a lot about me - my high frequency hearing loss, autistic type symptoms, greater predisposition to the movement disorder I have, gestational diabetes, etc...

I don’t actually know if I have it but I have a 50% chance of having inherited it. Great timing to tell me too, when I am 35w pregnant and knowing now I could have passed it onto my son...

It is what it is, but if I had known that I had these risks for certain things, I would have been more careful about lifestyle, medication etc that has affected me now. I’m sure if I knew for definite that I had it, then I would probably worry about things more - but it is the not knowing that is making me anxious too.

I know I am BU in worrying about something that potentially I don’t have, but I think it might be better to know these things as I am about to have a baby and could have passed it onto him.

Has anyone else ever had this or known someone with it?

If you'd known would you not have had a baby?

Well, I have a DD already but I guess I would have thought twice about having more children. It makes me sad to think I could have adversely affected my children’s future health and wished my birth mum had told mr earlier to be honest...

She definitely should have told you before now. Does she have it?

Is there a test you can do, to find out for sure?

I don’t know why she didn’t tell me before now. I just attributed my symptoms like hearing loss and slight autistic tendencies to being 3 months prem as a result of her taking drugs, plus my movement disorder was caused by an antipsychotic that I was prescribed (but was possibly predisposed to getting as a result of my prematurity, and now - if I think about it - the mitochondrial condition).

I feel a bit pissed off today. Sorry for the rant...

Yes, she does have it - as does her mum and her brother too...

Can you speak to your midwife and asked to be referred to a genetics counsellor?

That's a lot to have dumped on you without additional support. I agree your midwife will be able to help you find more information and professional advice.
It really wasn't kind of your mother to tell you that and not at least giving you information about places you could go to for support.

I hadn’t thought of that - a very good idea! I’m really hoping I haven’t got it but with a 1 in 2 chance, the odds aren’t in my favour really. It can encompass a whole range of rare and life threatening conditions- most of which I have hopefully avoided - but as it has also been linked to things like Alzheimer’s and cancer, my risks for these are potentially higher too, I guess.

I suppose the operative word I should focus on is ‘possible’ - there may be a possibility that I don’t have it at all. I think a muscle biopsy or something is how they diagnose it but I get that feeling it is notoriously difficult to diagnose properly.