Sjögren's Syndrome
Do you have or know someone with this condition?
We are looking for people with this condition to take part in a short 20-minute face-to-face interview to check that a new questionnaire is easy to understand.
All participants must be from the UK and native English speakers.
All participants will be paid £40 for their time.
If you are interested, please respond with a PM to this message with your telephone number and name so that we may call you to arrange the interview.
Well from the posts on here it's obvious quite a few of us do but I am also aware most posts like this go through Lupus UK admin first and with you just joining HU today it is probably making a few members wonder if this is a correct post or scam as other posts similar have been.
Please be aware that giving name and number to an unknown can cause a lot of trouble.
Hi littleeffie,
It seems I may have gone about this the wrong way, I am really sorry!! This is not a scam but a genuine request to help develop a questionnaire which will be used in a clinical trial for Sjogren's syndrome. You mentioned I should contact Lupus UK admin. How do I go about this?
Thanks in advance for your help.
Kind regards,
Steph
Hi Steph,
You came to the right place because the BSSA don't have a HealthUnlocked or Facebook presence.
I have Primary Sjogrens and am in Scotland and would be happy to take part in your survey.
However it would be better if, as LittleEffie suggests, you do this through Lupus UK. Could you give us a link to let us know you are part of a recognised organisation or university or whatever, for peace of mind. I would certainly require this before I would think of handing over my contact details.
Best wishes
Twitchytoes
Ps to contact LUK admin you could look for admin, Paul Howard, on the main community HU posts page and pm him with information relating to your survey and request.
Hi
Just trying to keep all the sufferer/survivors on here safe and happy.
I am on a number of forums and have noted a number of posts very similar appearing on them although some state university interest.
Please do contact Paul or Fabienne at admin.
Help,research and promoting awareness of conditions is always appreciatively welcomed but we do need to keep personal details safe.
Thank you.
I am diagnosed for six years now. Happy to help
Hi I have Sjogrens and I am happy to help when you get sorted gojng through lupus uk - thanks !
Thank you all for your replies, I really appreciate your help! I have contacted Paul at Lupus UK as advised and awaiting his reply.
I would be happy to take part
I also wish that healthunlocked had a sjorgrens group
Perhaps, if you haven't already done so you could join the BSSA? Then you could say this to the administrator on their member's only forum as I've done. The more pressure brought to bear by members the more likely they are to set up an HU BSSA community.
There is an Australian SS one but it isn't used very much and it would be much better if we Sjogrens people here had a UK one.
Although I have to say the Lupus UK community and admin are wonderful anyway and they are sister diseases so there is a great deal of overlap.
I'd also be happy to help & wld like the £40 to go straight to Lupus UK if that's possible.
Happy to help once you get the ok from LupusUK ADmin
I'm happy to help too
Hi Stepstell,
I have Sjogrens and would be happy to help also once you get sorted with admin.
Thank you very much! I will be in touch again when I hear back from admin.
Hi you can actually contact the official sjorgrens face book page and speak to Pam who actually was asked to run it by the BSSA , but I would also be happy to take part ! There's a few of us over on the fibromyalgia page , on HU too!
Shadow !
Shadow I may be wrong but according to the BSSA admin this FB page you refer to is absolutely unofficial and in fact there's a post from the BSSA admin stating that any reference to it on the BSSA's community forum willl be immediately removed. So if this research is to be officially sanctioned by the BSSA I do not think that going to the FB page you are speaking about would be a good idea at all?
Oh! I will check that out with Pam , I just took a quick look and well it's a closed group with 337 members and it states they are a support group for sjorgrens, BSSA , sle and it has the tel. No for BSSA on the side to contact and join , it also supports pots too but what do I know I might be Wong to 😊😊 , but they are really helpful for sjorgrens for me 😊 As I get wonderful support and that's what it's all about isn't it 😊😊 tel no . 01214 780222 for the BSSA 😊
It's a really supportive page I agree and I think the BSSA know that their members and non members use it and get lots of support from it - but for what ever historic reason, they seem to choose to dissociate from the social networking, apart from their own members forum - which I personally find very unwieldy and under used. Very tricky to get onto and stay logged onto and a shortage of people using it too as you have to pay £25 to join first.
It would be great if they would have a HealthUnlocked community instead, but I guess it's probably too much money and admin time for a very small charity perhaps?
Yes I have primary sjorgens syndrome. I live in Scotland and willing to be interviewed
Ann.lister@sky.com
Thank you all for your continued support! I'm really amazed by all the positive reactions and grateful for your help. Reading about your comments about there not being a Sjogrens group isn't there a forum on the BSSA website but you need to pay £25 to join and become a member to fully use the website?
Yes there is, as I've just replied to Shadow, but unlike HU it doesn't tell you when there are replies or send updates ever, is very hard to stay logged in or edit posts, so I've found (mine all double -embarrassingly!), and therefore only serves a very tiny proportion of the international or even the UK Sjogrens community.
It could be that my tech problems relate to being an iPad user, but I tend to forget my login in details and then find I've had replies that I'm unable to respond to or comments that are ages old because of the logging in process and lack of e-alerts.
I'm not sure if you are aware that there's also a UK Sjogrens Registry, based in Newcastle I believe, which some rheumatologists were using to register diagnosed patients on in order for them to be part of research? But it's stopped due to staffing issues or changes the former admin person told me.
Anyway I asked a very straightforward question about it on the BSSA forum recently and was told my post was not publishable or relevant by the admin/ server! I felt like I'd done something wrong but I was only asking an innocent question as a newly diagnosed person who wants to learn and be part of any UK based research if possible?
Otherwise I've found the BSSA a helpful and supportive (great helpline people) organisation to be a member of.
Twitchytoes, I agree with HU being very user friendly. My daughter has cystic fibrosis and I sometimes use the forum on the cystic fibrosis website and I don't find that nowhere near as user friendly as this site. Also I do not think that the BSSA should charge people £25 to use the forum, that seems very off putting.
That must be hard for you and good to have a community to share with other parents too. If there had been an Aspergers HU when my son was young it would have been a great help.
I actually think more people join up if they discover the charity through HU and yes it's so companiable and easy to use.
But Lupus UK is very well administered too compared to some communities. In common with many with autoimmunity, I have some lupus blood work and symptoms plus RA and have made some lovely Lupus friends so I feel safe and happy on here x
I would be happy to help 😀
Hi, it's me again. I have had a phenomenal response to my original post, thanks again for all those who have offered their help. Unfortunately I have had no men yet who have replied and we need a mix of genders for our study so I'm posting on here again specifically looking for men with Sjogren's syndrome who are willing to participate in our study. Thanks in advance for your help!
Hi stepstell ,
Only people who are following this post or constantly watching their newsfeed for this community will see this comment. Would you like me to post about your study again, specifically asking for male volunteers?
Hi Paul,
thanks very much for your reply. We have actually now been told that we can interview women only so no longer need to search for male volunteers. But thanks ever so much for offering to post again. When we have done the interviews I will let you know how many have come through this forum and I will make the donation to LUPUS UK as agreed.
Regards,
Steph
DLA
I have a new superpower
Has anyone hear got TNF receptor associated periodic syndrome.
I need to change my Rheumy !
