Hello

[Lupiknits]

I'm starting to follow this community after discovering my blood tests may indicate scleroderma, and I have many of the symptoms.

[pallinurse]

Let us know how it goes and what your results say. There are two major categories of systemic sclerosis or scleroderma; diffuse and limited. They have different patterns of symptoms and organ involvement. If you do receive a diagnosis, remember that many articles and websites lump both kinds together, and you will read about things that don't even relate to your condition because they did a crummy job of reporting the data more specifically (pet peeve of mine right now). Not only are there different subtypes, even within the subtypes there can be significant variability, so again, not everything you read or hear will necessarily be true for you.

The great thing about this website is that everyone is welcoming, supportive, and more than ready to listen, so let us know how you are doing.

[Hidden in reply to pallinurse]

Pallinurse, I do so agree with your peeve!

[Shelley53a in reply to pallinurse]

Hi, my sister was diagnosed a year ago with diffuse systematic schleroderma in which time has progressed significantly. After trying one lot of chemo she is now being offered a stem cell transplant. Do you know of anyone within the Uk that has undergone this or offer any information in this area?

Thank you in advance

[pallinurse in reply to Shelley53a]

Hi! I found these UK Guidelines for treatment; looks like there are a couple of societies in the UK and you could also try calling the centres listed in the author affiliation section to see if someone can answer your question. I am in the USA so don't have much scoop for you. Hope these help.

rheumatology.org.uk/include...

[Shelley53a in reply to pallinurse]

Thank you for the link and your help

[tall-tim]

It's good you found this group. Let us know how you are getting on.

Tim

[Lupiknits]

Thank you for the welcomes and advice! I'm being treated for an "auto immune thingy" - to quote my last GP. I'm happy to be here.

[angi123]

I am also undergoing lots of test as I have a high centromere pattern at 1 in 2560. So far they have found a problem with my liver, am due a lung CT as I failed the lung function test. What happens next. What is my future ?