My partner @Henrik is up for surgery 28th of February.

It’s been a long journey both before and after he got the diagnosis.

It’s been heartbreaking too watch my significant other be in so much pain for so long, and the syndrome has impacted both our lives strongly. I’ve been struggling with a lot of guilt when trying to live my life, when I know my partner is struggling.

I’ve talked too other caregivers on this forum and found it nice to talk to someone in the same situation. I’m open for other caregivers too reach out, and maybe make a group chat if needed :slight_smile:

Wish you all the best!


That’s a very kind offer & great suggestion, @EllaK. I hope some of our members who are caregivers reach out to you. :hugs:


@EllaK I think just the fact that you are here with @Henrik, trying to find ways to help him and support him will be a massive comfort. I cannot comment on more practical points but emotional support is extremely important. This is why i think this forum is fantastic because with any rare illness it is very to feel alone.


Glad that he has your support, & great that you’re reaching out to other carers!