been watching the posts that i could without being a member having been diagnosed with RA a few months ago, and because i really could do with some help and support, thought I had better join, however, reading with sadness the death of one of your friends I started to question how her name and details have been posted by the NRAS

I want to remain anonymous as i do not want anyone to know I have this disease so I checked the privacy policy Health Unlocked have- it states

Who can see my personal identifiable information?

None of your personally identifiable information (i.e. email address, postcode/zipcode, date of birth) is ever visible to other users or third parties without your explicit consent. We encourage you to choose a non-identifiable username as this is visible to other users.

Now this woman, who I do not know, has her name all over the internet, and yes it is visble as a non member, because she has died......not sure that is in line with privacy policy

17 Replies

  • Fiona used her name on many many posts to us all Sunshine. She was a friend to many people on this site over a long period and voluntarily wrote her name on the site under her tag name. I do not believe her full name was given to the site?

    Personally I have never seen anyone email address or d of birth unless they volunteered it on the site .

    Many people choose the option of talking on the message section which is private. And can if they wish exchange personal info between themselves.

    Nras and HU do have our details and I hope if anything happened to me NRAS would write to my family as HU is such a big part of my life. I know it is to many of us. And it was to Ronnie I believe.

    Of course privacy is essential but I must say I have never without the person messaging me, had any ones email or address in the three years I have been on the site.

    So personally I think you can be reassured on that matter. You have no details on your profile thus I don't know anything about you except your tag name. I chose to complete a profile with my interests and where I live roughly.

    YOu can always ring the nras helpline if you are concerned but I hope you continue to get the support you need from the site without any anxietyx Allanah aka Eileen xx

  • Thank you for your welcome and said this lady,s full name has not been given......yes it has in the topic heading and the posting is not exclusively for this group which I noticed is an option when posting. Perhaps a new inexperienced administrator

  • I can understand your concerns sunshine, but rest assured that your personal, &private, details will not be disclosed.

    Welcome to the forum.


    Sandra. :-)

  • Thank you Sandra

  • Hi there, it's an interesting question and I hope HU or NRAS will also reply to add to Allanah's response - which I think it how it is as well. But what I wanted to reply to was your point about not wanting anyone to know you have this disease. I don't know your circumstances of course so there may be a really special reason why you want to go this way, but often it's far more stressful to keep the information to yourself than to have it out in the open. I hope that, like me, that once you're treated you can go back to being 99% as you were. But even so, I do find it easier that everyone knows about it as there are still times when I can't do something, or need a bit of extra help. It's no big deal for anyone and I think most of the time they completely forget about it. And quite a few people have never even really registered what I have, so just think it's a touch of arthritis. I'm of an age where I lived through the start of AIDS, and lost a few friends to it, so well remember the awfulness of suspicion that surrounded it and the worry people had about having to keep it things about their health secret. Thankfully the world has moved on since then, and anyway RA is a very different thing.

    The important thing to me is putting yourself in the best position to deal with this disease and be able to manage it - so please consider carefully whether having friends and family know would make it easier for you that keeping the knowledge to yourself.

    But whatever you choose welcome to the forum and I hope you if find it supportive. Polly

  • Thank you for your warm welcome....and will consider carefully your thoughts


  • Hi sunshine and welcome to this forum. This is the first and only forum I've ever belonged to or posted on. When I joined, like you and many other, I watched for a while before posting. I also felt vulnerable in this cyber world about posting and using my real name so I created my AKA. Now I've been using the site for about 8 months I feel so completely comfortable and at home here that really there was no need for my AKA. My name is actually Claire not Rosie, but as everyone now knows me as Rosie there seems little point in changing it now. I also think someone times that HU is like a separate little world, with virtual parties, dance competitions and utter madness and actually having an AKA adds to this.

    I really hope you continue to use this site. I thing it could be invaluable to you if you are not wanting anyone to know about your condition. Here, you can talk about it, give and receive help support and advice and believe me we really need that with such a horrible condition, even when we don't keep the condition a secret.

    Take care, Rosie AKA Claire xx

  • The problem is that Rheumatoid arthritisis is not a well known disease. Any kind of publicity is good for awareness. I did not read that post but I'm sure it was well intended. If you wish to remain anonymous, it is your choice so don't divulge your name to anyone on this site and you will remain anonymous and you will get the support that you seek.

    If the name of the person who died was made public, it is because she would have told her real name to someone on this site.

  • Hi Sunshine. Welcome to the site. Please don't worry, everyone here will respect your wish for anonymity and any limits you want to place on the info we have about you. I'd just like to add a little to the points Polly made re the anonymity question. I know it can be tough coming to terms with a diagnosis of RA and I've no doubt I'm not the only one here who was busy trying to deny it to myself and wasn't about to let anyone other than my very nearest and dearest know. However, a time might come when you find your ability to carry out your duties at work (if you do work) are impaired by your condition. If your employer is made aware they are obliged to make adjustments to accommodate your reduced ability. This can be anything from making physical changes to the workplace to adjusting your working hours or any targets you might be expected to achieve. It also affords you additional protection under the DDA so you are less likely to lose your job. I've found most people are sympathetic and willing to help if they're informed. But all things in their correct time and place. I hope you soon feel comfortable enough to let people in. In the meantime we're always here for you. Pat xx

  • Hi sunshine, how do I stop my details being put on here in the event of MY Death, I would not like people who are not family to know what I die of. This worries me

  • Dancing, as I tried to say Ronnie was very open and told us of her illness step by step and was supported. By all her friends here. Do contact the NRAS helpline their number is on the NRAS website to discuss your worries with them.

    I think this tribute ,as I see it ,is as we all have known Ronnie on the site for a long time. I think she would have smiled and got you with your name tag to join our funny strictly come dancing blog . A x

  • I am new to this forum which was why I posted my question regarding anonymity is all too easy for some idiot to get hold of a persons name and find out so much about them and use that wrongly. I would have thought that given the NRAS are involved with this that data protection covers us- am certain of that. And as I am new I thought it was supposed to be with user names so was concerned when I saw the post. I am certain it was all meant well. So in answer to your question- I have no idea how that would not happen and all I can hope for is that event for you is a long time coming

  • Hi SunshineSal,

    Thank you for joining our community and sorry that already you feel a little unsure about the security here. Admittedly I did post a member's full name after seeing it elsewhere on the site. I have edited my own and the other post while I await to hear if permission was given for this.

    To reassure you, NRAS does not receive your personal details at all as Health Unlocked retain these and we would never ask to have them. If we do know a member's name from their own admission, we would always respect their anonymity. We happened to know the lady in particular was a member of the charity (and therefore we had her name and details here on our own database). This, however, is inexcusable as I should have checked prior to posting that the first publish of the name was given with her permission.

    I hope this has not caused added upset to other members at this time. I am not a new administrator, I'm afraid it was just a case of trying to give a tribute to a valued member and lacking common sense for a moment. I hope you will accept my apology and be assured that this will not happen again.

    Best wishes,

    Ruth Grosart

    Digital Media Coordinator


  • Ruth thank you for that reassurance and somewhat relieved that unless I chose to my identity is protection and all that stuff.

    It is not that I wish to be anonymous rather protect my privacy....we we all aware of what kind of idiots are out there and all they need is a name......that is my reason for preserving my identity on an open forum such as this.......anyone can join this I assume and therefore could be a potential cause for concern...paranoid perhaps, and for that I am sorry. I think it is wonderful that this community shares such feeling for one of its own

    Thanks again

  • Hi sunshine. A couple of ppl know my name, but on here only refer me as lablover, and I do not refer to their real names either. I think the site is very secure. One thing that I do query is why you want no one to know you have RA, it sounds almost as if you are ashamed of it (of course I could be wrong, so pls forgive). By telling ppl you will find that you will get more under standing, when you perhaps are in pain etc. This isn't a nice desease to have, but alas, so many have it, from children to old people, and it really does need to be acknowledged :)

  • Lab lover....certainly not ashamed of having the disease as I know it is nothing that I have done however I need time to accept and deal with it. Have tried explaining to family and friends and just does not work so if I am to be open and honest without fear of judgement here I do not want any of my family to know how I battle each day with it...not for the moment anyway.

  • Just to say dancing, Ronnie discussed her operation etc with us all on here and got support from her friends. I think the lovely tribute from NRAS was helpful to all of us in the community who joined in all Ronnie's blogs.

    I am also sure it was as we all knew Ronnie for a long time.

    I would call the NRAS helpline if you want to tell them of your views, but as no one from your family would inform nras or hu of your death then how would they know?

    Ronnie would have had you in the Strictly come dancing funny blog, with your name !

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