nervous that i wont be able to have surgery! Started by: Megan Bridge

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    I’ve got a condition called Ehlers- Danlos Syndrome.. It effects my joint and I have a dilated aorta on my heart. its only dilated by 1mm though so barely anything and I have checks annually. I have two friends, one also a sufferer of EDS who had her surgery no problem and another friend with a dilated aorta 4.5! mine is only. 3.1! it wasn’t een that clea in my first scan so I had to have another, so it is reall only tiny.

    SOME people with ehlers danlos syndrome have a hard time healing but that doesn’t apply to me, I’m perfectly fit and healthy other wise. so there should be no reason for me to not have surgery should there? my gp and cardiologist aren’t worried about my dilated aorta, and my EDS just makes me hypermobile and I get pains in my joints

    so so nervous, wanted this for so long but now I’m panicking!

    Chris 33
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    Hi. 🙂
    I’m afraid I don’t know anything about your condition but just wanted to offer some sympathy – it would be awful being refused because of something you have no control over.
    Have you been to a consultation yet? Because that’s really the only way to know.
    Best of luck! X

    Kathryn
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    Hi I’m in a similar position to you – I have a congenital heart defect and was worried I wouldn’t be able to have surgery. I spoke to my consultant before booking any consultations and they said I would be fine to have surgery and that if it was required they would right a letter stating I was healthy and able to have surgery – maybe your doctors could do the same?

    Hannah 16
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    I have a condition, different to yours but also one that can really stunt healing.
    I got a letter from my GP and consultant clearly stating they are okay with me to have the surgery. Your surgeon should tell you wether he’s happy to operate with the OK from your doctors or not. You should hopefully be ok.
    I know how your feelings and it’s heart breaking feeling like you might not get what you want when you have to deal with the bloody illness its self ey! Best of luck! Xxxxx

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