How did you hear of Lupus UK and this forum? - LUPUS UK

LUPUS UK
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How did you hear of Lupus UK and this forum?

Spotty-ewe
Spotty-ewe

Although I was diagnosed with SLE 6 years ago nobody ever told me about Lupus UK and there was no literature about it at my GP surgery or the rheumatology dept at the hospital. There is now, because I have placed literature and posters I requested from Lupus UK in both venues myself!

I only stumbled across Lupus UK early this year when Googling some symptoms I was having. I then followed the Forum before joining last month. Since then I have learned SO much about the condition generally and my own symptoms specifically from others and from links provided on this site and wish I’d had this support 6 years ago! It would have saved so much heart-ache to share my feelings and anxieties in the early days with those who know and who would have offered reassurance, advice and invaluable support! I would also have felt less like a hypochondriac knowing that a lot of the symptoms I experienced, often one straight after another, were also experienced by others and that their feelings, worries and anxieties were similar to mine. I was not alone but I didn’t know that then! So thanks to all of you and thanks to Lupus UK for providing this forum and all the information they make available to us.

But how and when did you all find out about Lupus UK and this forum? Did anybody else stumble across it and waste years you could have been benefitting from the community? I’d love to know if it has only been me missing out for so long. Love and hugs, Spotty

21 Replies
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Hi Spotty, welcome here, all are welcome. As I found this special hub on my own to. Through researching on line, I saw it and said what do I have to loos, nothing. Everyone here is very supportive, kind, caring ,helpful uplifting, sweet and very informative. I only joined this year, and this hub is a retreat for many. All of us who suffer and conquer these conditions lend a helping hand. Wonderful for you to have taken initiative, and put that great information up for others to find help!!! Know that we all here come from many places, some ,like me, from across the world, but here, we all try to be one, and as helpful and supportive as possible. So nice to know you are not alone. Take care, be well. Peace, blessings thestorm

Spotty-ewe
Spotty-ewe
in reply to thestorm

Hi Storm,

So good to hear from you and interesting that you found this hub on your own too. Yes, already I’m feeling part of a special community, indeed family, where we are all there for each other offering support, advice, sympathy and true understanding. How I wish I’d had the support sooner, but I’m so glad to have found you all now. 🤗

Hi. I’m glad that you found us. Raising awareness is so important. Lupus UK would be grateful for all your support in identifying all the different routes that we can take to help patients. Best wishes Kevin. Chair Lupus UK

Spotty-ewe
Spotty-ewe
in reply to Kevin53

I’m glad I’ve found you all too Kevin. I’m going to spread the word as much as possible by placing more material in local GP surgeries if their practice managers allow it. So I’ll be ordering more!

I have also found by wearing the Lupus UK badge my husband and I have both had fellow Lupies speak to us and share their experiences. One hadn’t heard of Lupus UK either so she took the details.

So I hope in a small way I’ll be saving a few others long periods of feeling isolated and worrying on their own when there is this wonderful forum waiting to support them. 🥰

HiddenThis reply has been deleted
Spotty-ewe
Spotty-ewe
in reply to Hidden

Hi Pippa,

You are spot on (excuse the pun) re GPs and their general training. Many are willing to learn about our conditions and luckily yours and mine are, but some aren’t. A young male GP in our practice saw me recently about my spreading rash and assured me it was not the Lupus rash and prescribed an antibiotic cream which of course did nothing. I left a message for my own GP, who is difficult to see as she’s so popular, and asked for Dermavate. Sure enough the existing rash is now subsiding although unfortunately more is erupting elsewhere.

My GP thanked me for the literature I took in too and so did the rheumatologist, so I’m encouraged to keep spreading the word where possible. But I know I’ll come up against the odd few who won’t want to learn especially from a patient!

But we must keep trying! 😉

Spotty

Hello. Yes, like you I stumbled across health unlocked and am so glad I did. I’ve found so many answers here and it really does make you feel you’re not alone. Great idea to spread the word in public places. I’ll bet there are more of us than we realise!

Hi Barbara,

Interesting you had to find out about Lupus UK yourself too. Convinces me there is a lot more spreading of the word to be done, not least of all among those who treat us so they can help new patients find the support and advice of those who are going through it themselves. For me joining this forum is the best thing I’ve ever done. 🤗. Spotty.

I was diagnosed in 2017 n unfortunately I wasn't on the internet then..I hadn't even heard of lupus!! My dermy gave me a leaflet about it from the British association of dermatology (BAD) n at the bottom of the info was lupus UK address so I wrote to them n became a member..best thing I ever done!!

We too have had people talk to us about it because we wear the badges..well hubby does n I've got one on my bag!!

I totally agree that this forum is a wonderful place to find out about all things autoimmune..which empowers us as patients..n educates our doctors..if they've a mind to listen. 🤔

Glad that you've found us now...U R NOT ALONE!!! 💜💜Xx

Hi Krazy,

Your dermy sounds very good giving you the leaflet about Lupus from BAD which led you to Lupus UK. When I was undergoing tests for the extensive rash I had just before Christmas 2012 (as a reaction to Terbinafine) my Dermy simply said, “I don’t know how this is going to pan out!” wished me a happy Christmas (as if!!) and that was it. I went to the local library and took out a book about Lupus and it was another month before I was referred to the Rheumy who although very caring and helpful, still didn’t tell me about Lupus UK.

But I’m here now and grateful for all the support and advice from all of you. It is such a comfort to know I’m not alone! 🥰

Oshgosh
Oshgosh
in reply to Spotty-ewe

Yes I agree,no one suggests contacting charities like Lupus uk for information.i also have contact with BLF, they are very informative

Spotty-ewe
Spotty-ewe
in reply to Oshgosh

Who are BLF? Do you recommend them for Lupus? 🤔

From my own experience-nobody tells you anything.they tell you not to google,but there’s no information available unless yougoogle.

I have diagnoses of NSIP and Lupus.

When. I go to clinics there is never any information about these conditions.

Usually the leaflets are about cancer.

The rest of us are left to flounder

Spotty-ewe
Spotty-ewe
in reply to Oshgosh

I know what you mean Oshgosh, I’ve experienced the same. And sadly it seems we aren’t alone in our experience. That’s why I’m determined to make the information available to others, if I possibly can, by taking leaflets and posters to appointments and asking for them to be put in the waiting rooms. So far this has been successful and I’ll start trying other local surgeries as soon as I’m home again from our annual trip tending family graves and catching up with old friends.

Yes, we are told not to Google but without Googling I’d have never found this amazing community. Thanks for telling me of your experience. 😉 Spotty

Thanks for replying,at east I know it’s not just me.who feels like this.do you get your leaflets etc from Lupus uk

Spotty-ewe
Spotty-ewe
in reply to Oshgosh

Yes, I order them on-line from Lupus UK and they send them in the post very quickly and of course free of charge.

General search for lupus inflammation and research.

Thanks Tom

Like Tom - a general search for Lupus information; 9 years after I was diagnosed.

I think it’s great that you’re informing patients in the community! More cascading effects than you’ll probably ever be aware of xx

Spotty-ewe
Spotty-ewe
in reply to maye1

Hi again Maye,

Goodness, you were on your own even longer than I was before discovering Lupus UK! So glad we have both found them now. 🥰

Thanks for your kind comment and I sincerely hope you are right! 🤞😊 Spotty

Well, I was in denial for years..

Yes! If it helps even just one person to connect and feel less alone..

Xx

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