Advice

Hi, I'm new to all this and have just been diagnosed with systemic sclerosis and Raynaud's, never having heard of this or know anybody that does, please could you tell me if there is anybody in the Leicester, Leicestershire area that suffers with this disease that I could talk to, to be honest, its come as a bit of a shock and I need to talk to somebody about this. Thanks

17 Replies

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  • Hi Joanne

    I understand the way you're feeling at the moment. A year ago I was in exactly the same position - newly diagnosed with something I and nobody else had heard of. This is a great forum, and you will get lots of advice from people on here.

    All I can say is this - Systemic sclerosis affects people in so many different ways so try your best not to worry about all the things that MAY happen to you. I, like you, was in a state of shock, and panic, when diagnosed, but a year down the line I am the same as I was last year, on a few meds now, but living my life exactly as I was before, and feeling no different. The same aches and pains and circulation stuff, as before...

    I'm in Scotland, so not near you, but suggest you also look at the Facebook support groups as people have a good support network there and meet up with people locally through that.

    All the best and try not to worry.

    Elaine

  • Thank you for your response, I'm sure when I get over the shock I,ll be fine, its nice to know I'm not alone. Thankyou.

  • You're welcome Joanne - hang on in there. As you've seen, there are lots of people out there to support you.

    Elaine

  • Hi Elaine. There is s planned meet up in Perth on March 27th if you are interested?!

    Jen

  • Hi Jennifer - I'm coming to that, so am looking forward to meeting you and the others then ☺️

    Elaine

  • Great! I'm looking forward to the Scottish meeting Elaine. The Manchester meet up at the weekend was so uplifting- such a nice day. Keep well

    Jen x

  • Thanks Jen. See you soon then

    Elaine xx

  • I'm from Aberdeen I have this

  • Hi there. So sorry that you are feeling overwhelmed with you diagnosis. I have Raynaud's and have had this for many years- pretty badly at times but have coped find and had various treatments. I also have some other auto immune problems, namely arthritis and Ulcerative Colitis, so can relate to some of the issues faced by those with full scleroderma.

    I recommend that you join the Scleroderma Family Facebook group. It is a fantastic source of support and sharing of ideas and information. There are about 700 members across the UK

    Recently we have just started to have face to face get togethers in various locations. I was at the first one in Manchester on Saturday. And have one in Scotland in 2 weeks and Lakes in July.

    There are also Volunteer support contacts and may be one in your area.

    I recommend that you contact the SRUK - Scleroderma and Raynaud's Society UK. They have lots of information and would know of support mechanisms near you

    Hope this helps you

    With all best wishes

    Jen

  • I Joanne I understand how frightening it could be, I was diagosed in 2010. I live in the Derby area in box me if you can.

  • Hello Joanne I live in Leicestershire and was diagnosed a year ago - I've sent you a private message

  • I have systemic sclerosis and Raynauds....diagnosed in March 2013 . Like you I had never heard of scleroderma. I live in Leicester and would be happy to chat on the phone or meet up for a coffee, whatever suits you

  • I, its nice to hear that I'm not the only 1. Where in Leicester do you live? Would love to talk to somebody local with the same condition, please feel free to private message me on Facebook.

  • I know how you feel. When I was diagnosed 2 years ago I was really worried and upset, as no one I know had ever heard of this condition and I have still not met anyone else with it.I have now come to terms with it all although I find some of the symptoms difficult to cope with at times. I live in Rutland and have frequent visits to all the hospitals in Leicester so if you want to get in touch I am happy to talk to you. I don't use facebook but will send you a private message with my contact details. It seems as though there are a few fellow sufferers in this area so perhaps we could arrange a get together sometime. Best wishes, will be in touch.

  • I live near Victoris Park.

    I don't know how to private message you. If you know how, please private message me

    Thanks

  • I live near Victoria Park. I would be happy to meet up with you anywhere in Leicester or Leicestershire. My email is brigidannejoyce@gmail.com

    Look forward to hearing from you

    Brigid

  • My heart goes out to you. I have Raynauds in 2-digits, ulcered, PAINFUL every single day and the evening is worse. I have been getting good feedback from members of Healthlock, and I am sure you will also. It is a shocking reality, and has truly put my life on a whirlwind of "I am unable to do this or that ", as my fingers are so damaged. My life as I knew it has changed. My Lupus is stable , yet there are other internal stuff happening since I was diagnosed last year. So please continue asking the members and I am sure you will receive the right direction to your questions. .

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