Are you a wee bit disappointed with this new site? So am I - but admit that I am not helping. We need to make it our own.
Could we start by saying where we live on our profile (give the general area if you don't want to be pinpointed)? Local information/support is very helpful in life but particularly when we are a bit 'different'. You might find out about a local service or resource or be able to recommend one to someone.
Also, if we are not ready/able to post a photo, could we at least ensure that the avatar* or dummy 'photo' represents us - that is, a female head for a woman and a male one for a man (unless you prefer the alternative, of course). *Funny the new words we have to learn when the memory can scarcely cope!
Also, list what specific things you would like to get from the site - information, meet people, etc?
Get cracking! Please!
Seán
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Hexham
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This group has a very slow response time and getting around the site can be a bit clunky as you said.
I agree with you that I am not a fan of FaceBook, but since Pat O'Connnor started the Lymphodema People on FB, I have found it to be the best so far. It appeals to an international membership and there are many very useful links too.
The members are friendly and helpful - Post a question or a query and within an hour there are many comments or responses..
Guess I am impatient LOL! but I would reccommend anyone looking for information to get signed on. Just ask to join and Pat will approve you . . . then you got the best of both worlds . . . here is the link for those interested -
Good Morning, Christo. Yes, we have connected before on the Yahoo site. It is, I know, a sign of obstinacy but I just don't like Fb (even though relatives tell me it's a great way of keeping in touch and sharing information). But I will say that Pat O'C is dedicated so I'm sure the site is fantastic - just going on his work on the Yahoo site alone. And he is very helpful. So I wholeheartedly endorse your reccomendation above!
I prefer this site as on Facebook all my friends see my comments when asking or commenting on my group regarding my lymphoedema. I also think there are a few technical issues with this site as I have tried to update profile pic but its not happening! I have submitted feedback so hopefully it will be fixed soon
This is a very new site, so not everyone knows about it or remembers to log in regularly, give it some time I'm sure it will pick up! Additionally, a lot of people only pop into a site about their illness when looking for advice - rather than daily, weekly etc..
Kelmisty: you are right ... but! I think it would help everyone if we all put in our postcode or general area. There is no expectation that we need to become best friends but it would make it easier to share/ask for information with someone in our local area - whether about services, products, shoes/clothing or other tips. I agree with you - hope with you - that it will pick up. Seán
Thanks for the comments guys - If you are having any technical issues please do let us know and we will feed back to the Health unlocked team. We are based on South West London by the way Sean but have a Nationwide remit -
i think the site's had a cracking start! having come over from the breast cancer care one, this doesn't feel clunky at all - & i'm learning loads about primary ld & wondering how on earth people manage with it on eyes & scalp (i'm breast cancer related bilateral arms, hands & trunk, so at least both my arms & hands look like robot-skin)
i wonder if it'd be possible to have headings to go to - for example, there are 3 questions on the go at the moment about equalities & discrimination, which could have been bunched together & become one thread eventually, & if the same questions come up again in a couple of months those answers'll have disappeared into a long list which would be a great resource if there was a way of spotting which bit to go to
& i bet those of us trying to lose weight wouldn't mind somewhere to swap tips & get pats on the back (congratulations ones or commiserations ones)
but it's early days & it'll take time for people to join in
by the way, i thought it was great that there was an email in my inbox yesterday giving examples of a couple of current questions - it's what reminded me to log back in, so doing that every now & then (but not too often) would work for me
I am just so glad to be able to read, and communicate with people going through similar situations. I have just felt so alone. The biggest problem for me is the lack of knowledge in the medical world.
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Referred back to GP from lymphedema nurse
How can I get dry?
I am going to have 2 weeks intensive leg bandaging in hospital but they want me to have restricted fluids and take diuretics.
