Just waiting for you...

Welcome to a new, free Raynaud's and Scleroderma Association resource delivered through HealthUnlocked.

This new site doesn’t replace the existing RSA services – like their website or newsletters – but expands what’s available to you. Simply put, this site is an easy and personal way to gather and share information securely from others living with, working in or affected by Raynaud's and scleroderma.

To summarise what’s available on the site:

The 'Community Blog' is for people like you to write your own blogs. Be optimistic, be funny, be helpful or just vent but be open and honest about life with Raynaud's and scleroderma and there’ll probably be a lot of people nodding at their computer in agreement as they read your posts.

And just hit “comment” below a blog entry to add your thoughts on someone else’s blog post. (You can do it to this one as a practice if it’s your first time.)

In "Questions" you can ask something to the community about any topic - maybe how other people manage their meds, or if they've had problems accessing services. Someone in your community may have some additional knowledge and experience that can help. And you can also offer people the benefit of your experience too.

'Hospitals' shows feedback on hospital facilities from others with the two conditions broken down by geography. It might help give you ideas on who you want to help manage or treat your condition. As a new site, this a blank canvas right now so don't forget to add your own review to make sure it becomes a rich resource.

And you can answer the 'Poll' for a quick way of seeing how others might feel about a particular topic.

Over time you will see your community grow. Our experience tells us that new members come in fits and bursts and is definitely affected by how much you get involved in the site. The more you add to it, the more you’ll get from it.

We hope that you will find the new site useful, interesting and rewarding. We’ll be following its development with you and we’re always happy to get feedback so that we can improve what we offer you.

Remember this is a great resource but it's not a doctor and you should always consult with your doctor or clinical specialist about your condition, particularly if you are considering a change in treatment.

Enjoy it.

Katie

HealthUnlocked

[Hidden]

I was diagnosed with Raynauds and Scleroderma 6 years ago and had to relocate from London to Oxford. I have spent the last few years readjusting and making a new life for myself. Fortunately I have friends and family who have helped. I am now trying to set up a support group for sufferers in my area.....is anyone out there interested

[Emma2 in reply to Hidden]

Hi Mel. I am a CREST sufferer. I live in Yorkshire and was diagnosed about 2 years ago. I think you could advertise in Hot News about a possible support group - it might help you get an idea on how many sufferers are in your area and what interest the group may have. Good luck with it!

[Hidden]

Hi Emma, yep thanks for your suggestion, my name is going in the next issue so hopefully that might help get it off the ground.

Hope are you coping?

[Hidden in reply to Hidden]

Mel,

It's probably worth writing up your plans to run the group as a blog on its own. As we grow with more members, its the kind of thing that I'm sure others will be curious about. It will be good to track the progress you make -- no pressure then!

Katie