Sjögren's syndrome: Just want to thank all of you on... - NRAS

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Sjögren's syndrome

Frankiefocus
Frankiefocus
12 Replies

Just want to thank all of you on your great advice on Sjögren's syndrome. I contacted the Brtish Sjögren's syndrome Association BSSA and they sent me this excellent information pack today with loads to learn about syndrome and how to cope with it. They do not email so if you think you suffer from this just give them a call.

bssa.uk.net/

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Candy

Thank you for this. I’m at the hospital tomorrow after a referral from the GP querying this, although unsure how they diagnose. 😊

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J1707
J1707
in reply to Candy

Hi candy on paper all my symptoms point to Sjorgrens syndrome. I’ve been told I need a salivary gland biopsy to confirm it.

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Candy
Candy
in reply to J1707

I’m hoping I don’t need any tests, it’s been a bit of a year for them, and I’ve really had enough. Have they referred you for the biopsy?

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J1707
J1707
in reply to Candy

Yes it’s only a small procedure take a sample from inside of my lip they just numb it.

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Candy
Candy
in reply to J1707

Oh that sounds better, not so invasive. Thank you, that’s reassuring. 😊

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Twitchytoes
Twitchytoes
in reply to J1707

I had it done 3 years and it was fine - 100% positive for Sjögren’s so very glad I had it. Best of luck.

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J1707
J1707
in reply to Twitchytoes

Thanks 🙏

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poemsgalore1

I'm a member of this charity. :-)

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Twitchytoes

Hi there I have Sjögren’s. The BSSA have a great biannual magazine and a volunteer helpline. Membership is money well spent although sadly they don’t have an HU community or FB presence.

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poemsgalore1

I wonder if we could persuade them to start one Twitchy 😘

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Twitchytoes

Lol I’ve tried in vain - they haven’t got anyone to admin. Plus had their fingers burnt by someone on Facebook so now can’t be persuaded. I mostly use Lupus UK (am paid up and committed LUK member too) as you know and have overlap including Lupus and RA. We will just have to keep going all the way to Australia for some Sjögren’s company lol (there’s an Australian Sjögren’s HU)! Xx

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poemsgalore1

I know, I'll give that another go. 😀

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