Ehlers-Danlos Support UK
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👋👋👋👋 from littleeffie

Hello all

Many of you will have been missing our littleeffie...the other day I messaged her to check in...she got my message on the first day she had been well enough to go online for sometime due to a HORRENDOUS emergency hospitalisation involving all that A&E can do for a patient & their loved ones

She is now an isolation inpatient

She is being her dear, courageous & funny self...and asked me to:

"Say hi to the forum folk for me as I see more gadgetry coming my way from stern looking nurse so think that will be me done on here for today"

Am sure you'll all be sending recovery vibes to littleeffie...she isn't out of the woods by any feeling vvvv relieved the medics are taking her complexity impression is that she is in the hands of a gang which includes at least 1 True Detective medic

🍀🍀🍀🍀🍀. Coco

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Bless her. I hope she recovers soon and please keep us updated? Xx

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Will do...haven't had an update from her since Saturday....

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A new message just came in from littleeffie:

Hyper quick message.Out of infection control and off to nuclear medicine dept.blood clot on lung! Actually dont feel three bad,won't have internet access for awhile so .Hi and bye,Should be back online approx 5 days,

Take care

Love to all xx

Fingers crossed for her! 🍀🍀🍀🍀🍀🍀

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Has there been any further updates? I missed the last one as I must have forgotten to tick the update me box. 

I hope you're well too?



Hello there...sorry: the Lupus UK forum had the latest: so am glad you asked.  Heard from Effie just before the Easter weekend: she was continue to 'hold her own' and seeing some improvement, but didn't expect to be released from hospital for another 2 weeks minimum.  🍀🍀🍀🍀 hoping for another update soon

Am doing more or less ok, thanks...had a good appt no3 with the Pelvic MDT WHS physio who has now confirmed all the prolapses as anticipated...none are so severe that we can't manage them with 'conservative measures'.  There are more investigations needed in the gyn dept though re DES daughter predispositions & something a bit sinister the physio found.  Meanwhile the gastro side of the flare is responding well to treatment.  & on & on

How are you?


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I'm so pleased that Effie is holding her own and may even be allowed to go home soon. That is great news. 😊 Let's hope she continues to do well.

You've got an awful lot going on but it sounds as though you're getting somewhere. It's also great that you have some well informed consultants although I'm sure it hasn't always been that way. 😉

I've popped an update on my last post, as I'm not doing too great all over, but gynae contacted me today, having received the update letter regarding the prolapse, and they had a cancellation this Thursday so have slotted me in. That's a lot better than May. 😊

Look after yourself and I'll keep an eye out on more updates.


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