Lupus awareness day

[Cal66]

Has anyone received any leaflet or anything to be able to share and show people about lupus awareness day? It was when I was about to put information on fb when I realised that I couldn't find any leaflets to photograph, so I just used a purple background as I couldn't find anything else.

[Betty909090]

Hi,

There are all types of leaflets to download as .pdf files on this website!

At the top when you first log in.

Tap/click on “Publications “ at the top right!

Regards

[Cal66 in reply to Betty909090]

HiI have just looked on the site, but can't find anything to click on, please tell me what to do so that I will know for lupus awareness month, thank you?

[Betty909090 in reply to Cal66]

Hi Cal66,

When you first get to the Lupus UK website homepage at the top you will see a banner advert for LOTTERY. Just below it you should see the tappable/ clickable “publications “ ie rectangular box!

I’ve taken a screenshot of what I mean. Have a look at the photo below to orient yourself. Trust the photo helps?

Tap/click publications top RIGHT of home page!

[Cal66 in reply to Betty909090]

Hi BettyThank you, I have now downloaded the and will put them on fb later after my morning nap.

[Kevin53]

If you join LUPUS UK you will 3 excellent magazines per annum. The Spring edition also comes with posters for May 10th. Best wishes Kevin

[Cal66 in reply to Kevin53]

Hi Kevin I have been a member since 1993 and I receive the magazines. I have a very naughty puppy who eats paper, so we have to hide magazines and letters from her. At times it can be months later when we find them to read & if any leaflets came with it then they would have possibly been chewed up

[Chris21]

I received my poster along with my magazine. £10 a year can be a lot of money to some, but for me it’s worth every penny. 🙂

[Cal66 in reply to Chris21]

Hi ChrisIf the leaflet came with my magazine it could have been chewed up by my naughty puppy. Blossom, is obsessed about eating any type of paper. I have now downloaded leaflets from lupus uk website. I seem to have brain fog, my brain isn't working properly at the moment. I have just had my stitches following a biopsy out yesterday and never thought of looking on there.

[Chris21 in reply to Cal66]

naughty Blossom 😂 Brain fog is annoying, I’m always forgetting words. Hope you get good results from your biopsy 😊

[Cal66 in reply to Chris21]

Thank you. Blossom looks like an angel, but she is 12" of naughtiness however, we love the little monkey.

[Naladog]

Hi Cal66 👋

In addition to what our lupi friends have said, you can find a lot of resources to raise awareness at this link: worldlupusday.org/

Honestly, I was expecting more awareness on BBC or national televisions. I've watched the news from different countries and I haven't found anything 😕, perhaps I did in the wrong time.

I posted it on my social media and despite having over 300 views yesterday, only two people liked it. 🤷🏼‍♀️ (None of my friends or family, the truth is that sometimes you don't know what to think).

Hope everyone had a nice day yesterday and everyday. 💜🦋💜

[Cal66 in reply to Naladog]

Hi Naladog,I am also very disappointed as I expected hearing something on TV, possibly on Loose Women because of Kelly having lupus, but heard nothing. This year I shared my fb memories on lupus awareness days over the past years.

[StriatedCaracara in reply to Naladog]

I feel disillusioned too.

I think poetry writing and sharing can be powerful.

Can be quiet simple, but allows more people to connect with the themes described.

May start a post on it. Next year people might be able to share some Lupus poetry on TV.😌💭

[StriatedCaracara in reply to Naladog]

This is an example of a poetry initiative for carers.The look and feel of the site is good and if they got on TV it would be so easy to reference.

Think the idea could be extended to medical conditions - like having a site for lupus poems..which had big clear writing etc

carerspoetry.org/

Never good at writing, struggled at school but even I could give this a go.

[Naladog in reply to StriatedCaracara]

That's beautiful 😍. Thanks for sharing.

[StriatedCaracara]

I Googled (using within last 24 hours search criteria) and found some countries where World Lupus Day did get in the news. India had the most links. One of the news channels in the States gave a mention. Italy, France and Jamaica were others. I think it may take someone connected with the channel, to have an interest.

[Cal66 in reply to StriatedCaracara]

I can't understand why not many countries have not done more about it, we will just have to make sure that for lupus awareness month we all do more about it.

[Krazykat26 in reply to Cal66]

Lupus UK lit up the Tower of London..bright purple with the lupus UK logo 💜I saw it on my Instagram feed this morning 💜🌈 xx