Finding someone like me

[KayD_]

I am living with systemic sclerosis it has been a while now was wondering if anyone on here with the same thing is from London? Would appreciate if you could message me. I am yet to be in contact with someone with the same condition feeling like a lone soldier would like to be in contact with someone who actually understands from experience not just people watching me deal with it (not that I don't appreciate them loads but I'm sure you get what I mean)

[Bean82]

Hey - I'm in Oxford, so only 40min on a train! Feel similar and there must be loads of us out there!! Anyone else 'local'?

[Hidden]

Hi Kay D

We have an active South London group, the contact details are on the SRUK site, or you could ring them.

You're right, it's good to talk to others in the same boat.

[Sami13]

What type do you have? I feel like you completely alone. Even though my family try to understand they can't. They mean well I know ! I'm in Essex and I'm under the team at the royal Free. Be great to meet others just for a moan !

[Fuchia]

Hi KayD

I live in Ashford Kent. I too have SS and was diagnosed last year. I can get to London on the high speed in 38mins and visa- versa for you.

I too actually don't actually now anyone like us.

As you say,, family and friends are supportive in there own way, but not quite the same though.

You can contact me through the site you.

Fuchia

[satellite]

I live in Berkshire and would also like to meet others with the same sort of problems

Thanks satellite

[cowhide]

I met up with MilkMaid as we are local to each other and I think she'll agree with me it was great to 'vent' (we found we had over-run our parking on our first meet-up as we were talking so much!). Whilst family are supportive I think their eyes start to glaze over after a while, whilst fellow sufferers understand and want to share. Do remember, though that everyone's disease progression will be slightly different, even within the different forms of scleroderma.

[MilkMaid in reply to cowhide]

I have to agree Cowhide it was great to moan to someone who understood how frustrating this disease can be. Family & friends whilst being supportive don't really understand what you are going through.

[Suzyannayoung]

Hi there, I have diffuse Scerledema , raynauds, polymytosis ,osterperosis etc etc lol. I live in Lincolnshire. I have suffered with these diseases the last 6 years, up until then my life was so different . I would love to meet up with people with the same as sometimes think I'm going mad 😬. Be good to have a good chat , coffee and cake . Please get in touch if you are local to me 👍