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 My SS buddy

I think we are all familiar with the saying ‘a problem shared is a problem halved’, when I found out I had SS, there were very few people that had it diagnosed and even fewer that I could find. 

 

Cathy Ashley recently asked if I knew anyone in her area so she could have a friend to chat to that can relate to having SS, have you felt like that?  Within this group, we hope to buddy people up so that they can find a friend  who also has SS so they can relate to each other.

 

How does my SS buddy work?

 

First, you Request to join the group  (only for those with SS or their Advocates). Upon your acceptance, we shall note who and where you are (if you have not noted this on your Facebook profile, please contact us at admin@thesilentbleed.co.uk  telling us so we can match you).  When we have two requests that live close to each other, if you wish we Will contact you both then, if you wish, we can put you in contact with each other on Facebook.

 

My intention in creating this group is to bring people together that have this disease, I don’t think I could’ve put it better then Cathy, who commented within the group ‘I think that talking helps me a lot, so to help navigate through this condition, I was wondering if there is anyone local to me to chat to and possibly meet up for a coffee? We all need to help each other’. Do you live near Cathy? join the map and if you are within 50 miles of each other,we will inform you both individually then (if you still want to chat), you can find each other on the group and get chatting. Interested? Then join the group here, fill in this form and let's get you buddied up!

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Our Facebook group is a kind and compassionate space for people with superficial siderosis to share the ups and downs of everyday life - search 'superficial siderosis - the silent bleed' and send a request to join. Please see our social media policy and rules here

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