Ehlers-Danlos Support UK
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EDS Clinic Appointment, and now we wait

I went to the N. London clinic with as much info as I could possibly have (which isn't much as my family history is scant). The team was charming although everything seemed a bit shambolic - glad my OH was with me as he was able to remind the nurses and staff of things they had said they would do, but eventually forgot. While my rheumy had scored me as a 4 on the Beighton Score, they scored me a zero (fair enough, I've never considered myself 'bendy'). The general feeling was that visually, I didn't seem to have vascular EDS - although my skin is still pretty see-through and some of the scars I have don't look 'quite right'. It was difficult to explain that the symptoms I have may be 'normal' for a woman in her 40s, but I've had them since I was 6. Still, that's the sort of thing I tend to deal with. What they did do was the blood test - which I assume isn't just something they do on a whim, and not if they think you don't have it. So while they were very reassuring, they did take my blood and told me it would be probably a few months before I hear back.

So done and done, and I guess we will see how things go.

3 Replies

Thanks for letting us know how it went. Silvergilt. I also know I've had something similar all my life. Keep your chin up and hope the blood tests are good. My thoughts are with you. 💐 'M'

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Am so glad of your news...well done! Reassuring: ok. But somewhat perplexing. As you said: this is the sort of thing we tend to go through.

As we know, EDS is a spectrum disorder and some types just don't 'fit' into a set subtype...did they say anything about this?

Please let us know about your blood results.

Sorry I missed your news 3 days ago...for some reasons I don't always get EDS forum notices in my daily email from HU

🍀😘🍀😘 coco


Hi silvergilt. Thanks for letting us know -I wasn't able to reply sooner- I am glad that you have finally had your appointment,that's out of the way now so one less thing to worry about at least. Well done for going🙂..I know how important it is and that you must be feeling anxious while you're awaiting blood results. But you can feel reassured with the knowledge that you have attended a specialist unit this time, and unlike other 'non-specialist' consultations,you will now get answers that lead to appropriate care and treatment..I hope you wont have too long to wait.

I am waiting for my appointment at the private London Hypermobility unit.Did you go there?

Very best wishes x

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