Pregnancy

[Elle2090]

Hi Everyone,

My Encephaltis (anti NMDAR) has really gotten to me mentally lately. I told my partner that I'm scared, I want to have kids and grow old with him and not worry about this condition.

Does anyone know anyone who has been able to have a relatively normal pregnancy & birth with Encephalitis or post Encephalitis?

I'm one year on from diagnosis. I'm still getting rituximab every 6 months for the next year and half and immunologist say I have to wait a year atleast after stopping treatment to conceive.

I'm just worried but would love to hear of peoples experiences.

Elle 😊

[Ocean96]

Hi Elle!

Thank you for sharing your story! I really relate to everything you've said as I have Anti NMDAR Encephalitis too. I'm also on 6 monthly Rituximab infusions and my consultant also told me I have to wait 1 year after finishing treatment to try and get pregnant.

I have spoken to others who have had Anti NMDAR Encephalitis and who have successfully conceived! I spoke to one girl who even had a relapse and had a beautiful baby girl last year and both mam and baby are doing so well! Stories like that really give me hope and I hope it gives you hope too. I joined an Autoimmune Encephalitis/ Pregnancy group on Facebook also where I've met others in the same position as me and I've found that really helpful! I know its very upsetting and worrying but I find talking to my doctor about it and getting second opinions really help. I'm currently seeing a gynecologist to see if I can freeze my eggs and what other options I have. I would definitely recommend seeing a gynecologist and discussing your options!

Wishing you all the best

[Elle2090 in reply to Ocean96]

Hi Ocean96,

I'm glad to relate with you. It's nice to know that I'm not alone in my concerns 😊

It's awesome to hear that story. It gives a lot of hope. May I ask what Facebook group it was? I would love to join if possible.

Yes, the idea has crossed my mind re freezing my eggs. From what I've heard it's expensive but I'll have to do more research.

I hope we both get there ❤

[Jensibel]

Hi there.I had a different sort of E. Mine was HSV-encephalitis. I was 26 years old when I got it. My monthly periods stopped for about 6 months. But then they did return as normal monthly cycle.

I went on to become a Mum when I was 32 years old. I had twins!

My E memory difficulties made motherhood tricky at times. But as a family, we put tons of strategies in place to make sure things ran a smoothly as possible.