Support in the uk

Hi. Hope everyone is having a good day I guess that if you have raynaulds and you are in the uk the weekend was lovely being warm and today was painful again. I was just wondering if anyone one with scleroderma, raynaulds or overlap connective tissue disease know of any support groups or meet ups in the U.K.? I live in Essex. I have great family and friends but nobody can understand how I feel unless they have been through it.

Thanks xx

6 Replies

  • Hi Sami, I only have Raynaud's but yesterday morning was bad but got better during the day. Today was a bit bad with blue/white fingers etc, but still trying to live the dream so to speak. The only meeting I've heard of was in Birmingham but didn't know dates so couldn't attend. Would love to know like you, if any one knows of meetings as although lots of people say they know Raynaud's, but if they haven't seen it in action then they can't relate to it.

  • Yes, gloves, scarf and hat is back out for the daily commute to work.

    Layers are back on as well plus thick socks, painful stiff joints have returned after just one day back at work after some much needed annual leave.

    Plus to top it all a gas/electric bill landed on the doorstep for £480.

    I live in Essex perhaps will could start up a small group, as you are right good family and friends but not a lot of understanding of this complex rare disease.

  • Sounds good maybe I should post asking if anyone else is in or around Essex /London and wants a meet up ?

  • Yeah was lovely to feel warm for a change this weather certainly helps you to feel better if only it lasted forever

  • Hi Samir13

    I live in Kent and have Limited Scleroderma, Reynauds and Sjogrens and I also would really like to be able to meet up with people that have understanding of our issues.

    Family, friends etc.are great but just as you say.... don't really understand.

    Please let me know how you get on with a support group as I would love to find one too not too far away. We'll have to keep our eyes open for the annual conference in London this year. Th n we can all met up😉

    Thanks a lots

  • That sounds really good. Be so nice to meet up with others Feel very bored with the sound of my own voice sometimes! Let me know if you see anything in London

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