Ehlers Danlos Syndrome - is it worth getting diagnosed?

[Mumsknot]

Dd has always had hernias. She had an operation when she was 4 on an epigastric hernia and she’s had a series of hiatus hernias since then. She’s 25 and is double jointed on her wrists and elbows definitely (haven’t checked other joints).

She has recently discovered she has high blood pressure (a random health check at work) and she has terrible period pains.

Looking into it it could all be connected. Only reason I ask is I had mentioned this when she was younger and getting lots of hernias and I got by typical ‘you’re worrying about nothing’ response. I’m not a panicked mother by any means but dd called me last night and said she’s so fed up but her worry is that the GP dismisses her. Is it worth her exploring it? I’m concerned it’s impacting other things!

My son and I have hyper mobility and he has recently been diagnosed with a serious heart arythmia which may or may not be related, we are still both under investigation. So I think it probably is worth it. He was diagnosed privately through my work by a rheumatologist as a child (issues holding a pen, walking on tiptoes) but the NHS were never interested. In fact I recently had to go to the GP and pay for a letter to say he has it for his school to send to his examining boards so he can type his answers in exams (still has issues writing for long periods) and he looked at me like we were trying to pull a fast one. Unfortunately I think hyper mobility is one of those conditions that is frequently claimed by people who don't really have it to claim adjustments or as part of psychological health anxiety conditions, so the NHS are often sceptical. Not so much by teenage boys though ... he finds it really irritating. His cardiologist isn't convinced his heart condition is related but I do wonder as he also had a heart murmur as a baby. I think your daughter may struggle to get the NHS to refer her though.

My niece has EDS, she was diagnosed in her early teens.

She had a baby a year ago, and because of her EDS, she was referred to a specialist consultant who said she should have an elective C-section because going into labour could be dangerous. For that reason, I think it's worth getting diagnosed.

I couldn't get to the bottom of whether this consultant was to do with her EDS or her pregnancy, I'm afraid. DNiece didn't seem to know!