Warning to all with an autoimmune disease, I have... - LUPUS UK

LUPUS UK

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Warning to all with an autoimmune disease, I have Lupus and Sjögren's. I also have Ehlers Danlos syndrome and am going for genetic testing.

Pam-EDS profile image
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Hi folks just a word of warning if you have SS or Lupus RA or PsA and are 'double Jointed' hyper mobile. Please tell your consultants, GP and dentist. Never assume your pain is autoimmune related if your hyper mobile. I have Ehlers Danlos too and don't let any consultant do to you what they have due to ignorance do to me.

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Pam-EDS
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Shan_lupu profile image
Shan_lupu

Hi! Are you saying they are mismatching your symptoms? I have been diagnosed as slightly hyper mobile. Just curious as to what is going on. Thank you!

Purpletop profile image
Purpletop

Where are you getting tested? And who's looking after your EDS? I've recently been told I have EDS iii but no one seems concerned about it. I'm more worried about the weird De Musset and Becket's signs showing aortic valve regurgitation (and as we know, EDS is likely to affect the heart valves) but cardiologists say all ok.

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