Hi, I'm new here and would like to j... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Hi, I'm new here and would like to just start by saying hello to everyone.

Ladyandorla83 profile image
11 Replies

I have now been diagnosed with diffuse cutaneous systemic sclerosis and raynaud's phenomenon since early 2017 but as far as I can figure out this disease has been slowly growing within me a long time before the diagnoses. I am putting my trust in the consultants and keep taking the meds as have lung disease involvement now. ONE thing I am really pleased about, as I live quite remote and rural in Dumfries, is finding out that there is a support group meet-up twice yearly in Scotland on Facebook and will go and look into this as I initially thought there was no group get togethers for this disease as quite rare. If anyone has anymore info on this, please let me know, many thanks.

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Ladyandorla83
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11 Replies
fairy56 profile image
fairy56

Hello Ladyandorla, welcome to this wonderful site, we are a friendly group of people, always there for each other, through the good days and the not so good days, xxx

Ladyandorla83 profile image
Ladyandorla83 in reply tofairy56

Hi fairy56, Thank you so much, it's nice to know and will keep in touch xx

wednesday profile image
wednesday

Hi there Ladyandorla, hope you are keeping as well as you can.

Ladyandorla83 profile image
Ladyandorla83 in reply towednesday

Yes, I am starting now to think of myself first for a change as I am now 56 years old and feeling like a 90 yr old on bad days! But good excuse to get on electric blanket and watch telly x

Bec9680 profile image
Bec9680

Hi Ladyandorla,

I am not in the UK but I wanted to share a treatment that is working for so many people in US. People who have gone in remission & Lungs healed after a few years. I’m trying to give you & others hope. Doctors are finally linking autoimmune diseases to bacteria infections. Please go to roadback.org for more info. God bless!

GGhere profile image
GGhere in reply toBec9680

That's interesting Bec9680 - I'll have a look. Thank you.

Ladyandorla83 profile image
Ladyandorla83 in reply toGGhere

Hi Bec9680, many thanks for the info I am trying really hard to look after myself now as I'm not getting any younger, would love this disease to go in reverse and I'll have a look xx

GGhere profile image
GGhere

Pleased to meet you Ladyandorla83 and welcome. Several people, myself included, have come to realise that once we were diagnosed this disease had been creeping up on us for some time, maybe a few years. It's such a confusing condition with good days and bad days with a wide variety of symptoms. But we're stuck with it so it's good to pop in to this forum and chat with people who understand.

Ladyandorla83 profile image
Ladyandorla83

Thank you Betsie, I'll keep checking in and nice to chat xxxx

gindy profile image
gindy

Hi there, lots of lovely ppl on here and if you're having probs with a new symptom then pop in here as someone will likely be going through the same.

Welcome xx

Mirv profile image
Mirv

Hi, hope you are doing OK. I am new to this site too and live in a village outside Glasgow. I had been looking for a group in Scotland too. Did you find out any more about the Facebook group and Scottish meetings? I can relate to the the electric blanket and tv, it's the only time I get to put me first! Take care.

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