How did you find out about our HealthUnlocked site? - LUPUS UK

LUPUS UK

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How did you find out about our HealthUnlocked site?

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46 Replies
Skid profile image
Skid

Great site very helpful to all lupus sufferers.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toSkid

I'm glad to hear this.

hels profile image
hels

im so glad u have this sight u feel like ur the only one but its really helped x

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply tohels

I'm glad that you find it helpful. You're definitely not alone.

Binkey profile image
Binkey

Great not to feel so isolated.I am already finding out more about recommended medications as i have been on the receiving end of the pill popping suggestions.So once again,a very helpful contact.

Binkey profile image
Binkey

Found out through the Web,thank god.Great share info available without feeling like an alien.Wonderul.

irenestephen profile image
irenestephen

nice to know there are people to help and can do so because they are actually living with the desease as well - this site is invaluable for first hand information and feadback from others

mojo profile image
mojo

Wow i cant believe i have never been aware of this site, it has been so helpfull and given me some hope to, its so nice to share with people whom know how you feel, for even our doctors dont know exactly how we feel, well i dont hink they do , and my experience is i dont always feel as though iam being listened to so to here people have felt that to its grt to know iam not alone so a big thank you to all whom are involved in this set-up.... Mo...

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply tomojo

Hi mojo,

I'm glad that you've found the site and that you think it is a useful service. We are very pleased with the amount of positive feedback that has been received regarding it. I hope it continues to be of help to you.

mojo profile image
mojo in reply toPaul_Howard

thank you paul for all your help getin me on to this sight....

LorraineLT profile image
LorraineLT in reply tomojo

I totally agree, i have had lupus and fybro for a very long time, and still get really frustrated with docs who just nod in the right places, a fantastic site!!!

nix1977 profile image
nix1977

I found this via the Raynaud's & Scleroderma HeathUnlocked site, which I am also a member of.

Binkey profile image
Binkey

I am finding everyones input so helpful and mentally it makes me feel a little more sane to know I am not on my own.a big THANKYOU to everyone.

bettie profile image
bettie

Hi its a great site the biggest help to me is getting things off my chest and having somebody to answer who knows how i feel. Thanks to all

PeterWoolnough profile image
PeterWoolnough

I am glad that I saw the link on FB today. 16 years down the line and still trying to get my head around it.....

lucy-may profile image
lucy-may

Thank you so much for this fantastic site, it has been my life saver. I cant say how much it has helped me.I always feel so lucky when someone kindly shares their ups and downs with me. And to be able to share my own experience in the hope it may help a fellow sufferer....

This site has given me hope knowing i am not on my own anymore,,yeah friends and family try there best but only another lupie sufferer really understands..and thank you to the people that already helping and posting to me ,,and its only my 1st day,,thankyou so much.

jilllupus profile image
jilllupus

very reassuring,knowing there is OTHER people out there with the same disease.

LorraineLT profile image
LorraineLT

Thank you so much to the wonderful people that left me feedback about my hairloss, you have given my the courage that i needed, stay safe and well, best wishes

Carolmac profile image
Carolmac

What a great site! This will enable all lupus sufferers to get advice and speak to other sufferers who understand what their going through.

Alev profile image
Alev

Hi everyone I just found this site through google, it's a great...

I suffered an attack on my kidney's in 2010

I had 2 treatments rituximab. And am on mycophenolate since 2010 and feel remarkably well.

I use to have a lot of pain in the past. There were times I couldn't pick my son out of bed because my wrists were so weak :( this was in 2006. In 2010 february I was treated in hammersmith hospital and am very thankful to my doctors that treated me.

I still have mild pain but it's bearable.

PLEASE DON'T FEEL HOPELESS! There is always hope TODAY!

Lulabelle profile image
Lulabelle

Thanks Lupus Health Unlocked for the informative DVD and booklet for people who have been recently diagnosed with Lupus. i received this approx 2 weeks ago and myself, my partner and mother have found this very useful and helpful. i will also be taking this along to my next Consultant appointment for his perusal. Thanks again, Lulabelle x

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toLulabelle

I'm glad that you found the DVD helpful. It is always good to hear feedback. Thank you.

Looby profile image
Looby in reply toPaul_Howard

Paul - how do I obtain a DVD? I would like to show this to my husband...... Thanks

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toLooby

You can order them from here - bit.ly/z0Jffw

They are free, but we ask for £2 to help cover postage and packing.

Looby profile image
Looby in reply toPaul_Howard

Thanks I have ordered a couple to give to family..

tracynoe profile image
tracynoe

Found this through Vasculitis UK and Raynauds and Scleroderama on health unlocked sites I am a member of both of these

Looby profile image
Looby

I saw some leaflets in Supermarket, and chatted to some volunteers from Lupus UK. It was only then that I wondered if my symptoms were connected to SLE and arranged a blood test to confirm this.

Emmamarie profile image
Emmamarie

I am so glad I found this sight it has been very helpful to me. I have been diagnosed for over 30 years and this is the first time I haven't felt so alone.

Looby profile image
Looby in reply toEmmamarie

30 YEARS!!!! You will be so helpful to us newly diagnosed Lupies.....

You are among friends here.....and I'd love to hear your story.......

jessielou profile image
jessielou

Hi

I found this site through health unlocked, Hughes Syndrome/Aps site.

Only just joined and still on the edge of diagnosis. Have been reading through blogs n questions and found lots of useful info, another great site. Thanks so much!!!

Take care gentle hugs Jessielou xxxxx :-) :-) :-)

bodicea profile image
bodicea

the website appeared on something i was searching for, not sue if it was on Med line or Pub med - something like that

Gharrison profile image
Gharrison

I am so happy that I have found this site. Thank you for creating it :)

The HealthUnlocked directory! Looking at the stats on our community, I'd say most people come from our website, NHS Choices and google searches.

Alexandria profile image
Alexandria

I stumbled across your site by accident recently and have found it really interesting to read some of the other comments and leave a few comments of my own which I hope have been helpful. Great site.

I cant really remember how I found it but probably via a link from another forum or google search

pattismith profile image
pattismith

Some of the so called "Specialist Consultants" could learn so much from peoples comments and advice on this site !!!! I am far more confident with the response and advice from fellow Lupies than the Medical experts - of course l still go to Hosp appts, but have gained more knowledge from this site than any Drs. Thank you Paul for all you do and everybody who comments :)

RebeccaGilman profile image
RebeccaGilman

By web search, I was looking for lupus blogs.

L-2day4u profile image
L-2day4u

By accident on the web.

roseanncarthen profile image
roseanncarthen

Would like to go straight to what I searched for!

Cann profile image
Cann

Lupus support group

DD22 profile image
DD22

I was looking on line about steroids & came across it

Lupyknit profile image
Lupyknit

Found it on the internet after what was thought of as RA, and through the Arthritis UK site. Not been here long, but it's brilliant!

Dori44 profile image
Dori44

I really don't remember. It was either Facebook or more likely I was searching the web for support and to find out more about Lupus

Mimi1900 profile image
Mimi1900

Internet search on a lupus topic of interest to me

amanda73 profile image
amanda73

google

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