The Butterfly Sanctuary - Women With Lupus UK

  • Home
  • The Butterfly Sanctuary - Women With Lupus UK

The Butterfly Sanctuary - Women With Lupus UK Welcome to The Butterfly Sanctuary! A place for women with Lupus to talk, share and laugh in a safe and non judgemental environment. It's a book group too!

11/04/2017

Hi to all the ladies who have not yet joined our group. Just to say that if you're looking for the private group, you need to search under 'Groups' for 'The Butterfly Sanctuary - Women with Lupus'. This is the page for The Butterfly Sanctuary, but searching under 'Groups' will take you to the private group for members only. This ensures our members privacy in talking and sharing their struggles with lupus with other women.

When you find the group, please request to join and I will be happy to accept you. We are a friendly group of women and there is absolutely no judgement towards other members. We offer to support one another and share advice and tips on coping. We look forward to meeting you!

Suzy x

06/03/2017

Hi ladies. Sorry for the late reply - I will reply to you all individually shortly. I spent all of yesterday evening trying to find a way to make this page private, but I was unable to. Facebook doesn't have someone you can contact if you're having trouble with the site, instead it just has a help page. However, the instructions on that page were incorrect. So, after nearly throwing my laptop across the room in frustration, the only solution I can see to this is to create a new page - a 'closed' group - which will mean that your friends on Facebook can see that you're a part of the group, but NOT what you post. I would need to create a new group and then invite you to join it. I know it's a complete nuisance and I'm really irritated by it, but at least we've found out now rather than further down the line when we, hopefully, have more members, and there are more conversations which would be deleted.

Please reply to this post, if you can, to let me know that's okay, and please expect an invite to join another group (which will be very similarly named). Either that or it will be a friend request from me, whilst I set up the group. As you all know, my name is Suzy, but my last name is Rillie, so please look out for that.

The reason that the group was not made private in the first place was because I had received messages from women on HealthUnlocked to say that they couldn't find the group, even with a link. So, it was so that new members could find it. I didn't realise that I wouldn't be able to change it back. Apparently facebook says you can, but I've tried everything and I don't have that option.

Really sorry for this, ladies. Please let me know that this change is okay with all of you before I go ahead.

Love and hugs,

Suzy ###

03/03/2017

Goodnight ladies! X

01/03/2017

Hi everyone,

Trying to get this started again! Let's get it going this time, as I really think it would be fantastic to have a group of ladies who can support each other and build friendships. Lupus is a lonely illness, as we all know, and talking together and sharing interests and hobbies would be so nice for all of us. So, please reply to this post or make your own and say a little bit about yourself and let's get chatting!

Love and hugs,

Suzy

13/09/2016

Thought I'd write the first post, as I'm shortly going off to sleep and want any new members to feel at home with a welcome post! Firstly, I'm not sure if when you find this page, it has a 'join group' button or a 'add friend' button. I'm somewhat technologically stunted! If you can join, please do. If you need to send a request to join, I will of course accept your request.

Just wanted to say a big hi and I hope that tomorrow we can have a good chat! Please reply to this post, or write your own message. I'd love to hear about your life. We need to stand together as women and admit that yes, we wished things were different, but that we have become warriors because of it. We are strong, made of tougher stuff. Can't wait to talk to you all! Genuinely so excited :)))

Night night! Love and hugs,

Your Lupie Sister ###

Address


Website

Alerts

Be the first to know and let us send you an email when The Butterfly Sanctuary - Women With Lupus UK posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

  • Address
  • Alerts
  • Claim ownership or report listing
  • Want your practice to be the top-listed Clinic?

Share