To mark the event we've just released our new awareness video. It features three people with lupus talking about their experiences of getting diagnosed. You can watch it here.
From a survey of LUPUS UK members, we found that it takes an average of 7.5 years from the onset of first symptoms to get a diagnosis. This has remained roughly constant for decades. This delay in diagnosis needs to be reduced.
I think it would be great if lots of you shared your diagnosis stories to help highlight this issue and raise awareness today. Perhaps you could even video yourself talking about it on your webcam or phone and upload it? If not, please write about it in the comments below.
Please share the video. Also, if you're on Facebook, please pop over to our page today, join in the conversation and share the facts we are posting throughout the day.
Thank you.
Written by
Paul_Howard
Partner
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Hi everyone, I am angered as to how difficult it is to get a diagnosis. I am awaiting to see a second Rheumatologist which was recommended from a lovely lady via Lupus UK. I am on my third year of symptoms (sun sensitivity, aches & pains, depression, fatigue, cold hands and feet). The GPs I have seen, like so many other people have experienced, have no idea what is wrong and originally put everything down to a low Ferritin level (this is now been fixed). Is Lupus so rare that it is unheard of in the GP profession? As said before, other autoimmune diseases can be found quicker, why has/is Lupus constantly overlooked? Clare x
it took 4 months with intense pain, not knowing whats wrong then finally the diagnosis and because lupus mocks the symptoms of other illnesses i was getting wrong diagnosis intense hospital trips to A&E different hospitals, tons and tons of tests, x-rays, ct scans etc. Finally the diagnosis come, yes as a shock but relief to know what i had wrong with me.
Excellent video Paul, really interesting to hear other peoples experiences. Diagnosis for me took a number of years but we got there in the end. Thanks so much to everyone at head office for all your hard work, much appreciated. Shared on Facebook
It's good to know that people suffering with Lupus keep trying make us aware, I have been unwell for almost 1 year and gone through so many life changes and thats exactly what the illness does change you. My symptoms increase on almost a daily basis and to be part of Lupus UK keeps me going and the sufferers too, so a BIG THANK YOU to everyone for the continued support.
Just to add that you have to continue to research and ask questions to help get your diagnosis.
I was undiagnosed for 38 years! My first flare, when I was 13, was written off as "sun poisoning." Subsequent flares were blamed on viruses or stress. Finally, I stopped looking for answers. When I was 51, I was taken to the hospital by ambulance. I had kidney failure, congestive heart failure, bone marrow failure, and cerebritis. That was 10 years ago.
General practitioners are not given much training about lupus. The diagnosis is often tricky because they symptoms imitate many other diseases. Add to that the fact that there is no definitive test and you can see why so many of us are undiagnosed for so long.
3 to 5% of people with lupus will have a negative ANA. There are over a hunderd possible autoantibodies in lupus. Not everyone has the same ones. If you have anti Smith, you have lupus, but not all lupus patients have anti Smith, for example.
A diagnosis of lupus is based on medical history, symptoms, a variety of tests, and process of elimination. It is not an exact science and there is no definitie check list.
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