How did you first hear about lupus?: - LUPUS UK
How did you first hear about lupus?
I rang my Benenden Healthcare GP helpline to discuss my symptoms and the doctor suggested it might be “something like lupus”.
A consultant haematologist who didn't know what was wrong with me said he couldn't rule out a lupus type illness.
I think I came across it in the 1990's when I first had a different autoimmune condition
Already had Sjogren’s but really not well Found out about Lupus online then diagnosed shortly after
When I was first diagnosed in 1999 I had a doctor friend who was doing research for a drug company into RA drugs & she explained about different AI conditions,
When my Dr mentioned to me that Lupus may be a possibility.
I thought I must have had cancer from the way my doctor told me with the blood results in her hand. She looked so worried and told me to prepare myself. I don’t think she knew anything about lupus other than something she had quickly read. That was a couple of years ago. I am now with a doctor who has other lupus patients and understands some of the struggles.
My GP thought I possibly had lupus when I presented with symptoms in my early 30's, joint and muscle pain, butterfly rash, generally feeling unwell. Nothing was followed up as I appeared to get better. At 47 I had breast cancer. I have recently been diagnosed with Dermatomyositis, at 56 years old.
Other : consultant
I've voted 'other' in the survey. I read about lupus many years ago in a medical text book in a library when I was trying to work out what was wrong with me; this was at a time before it was common to have access to the Internet. (Instead of lupus, I was eventually diagnosed with ME/Chronic Fatigue and Fibromyalgia Syndrome and to this day I suffer with some lupus-like symptoms, but remain undiagnosed because I am sero-negative.)
i first heard about lupus when i was being tested for different autoimmune diseases. i was diagnosed with rheumatoid arthritis when i was 32 now at 52 i have been diagnosed with both rheumatoid arthritis and lupus.
My mother was diagnosed with it about 2008 aged about 74.
I think is a poster I saw Western Infirmary Glasgow back in 1975 There was a contact number in the clinic it was a life line the lady was called Jane I think it all started with Lupus UK
Was on my blood results that possible lupus and syrogens
It was mentioned at my 2nd reaumatologist appointment. I had been having odd symptoms for many years and then I would get better so would just try and 'will' myself better too ! I had anxiety but mainly that was as I felt ill I was almost laughed at by a GP on a few occasions one was after having nose sores which resulted in clots of blood ending up in my mouth . once when I showed him the purple blood spots on my hand and told him they only appeared when I felt really ill and sometimes my eyes felt like they would roll back into my head !!! And immense fatigue which was dreadful if I get cold he looked at me as though I was wasting his time , my confidence then was hit really hard ... Well it does sound extreme hahaha but extremely scary ..now I sort of know it's all connected and actually that's what my diagnosis is now Connective Tissue Disorder. Just having the reaumatologist listen and help and treat me has changed my life as I now understand and although I struggle to run my business even though I've made changes but as I'm self employed I am always having to cope or cancel work.
When I was first diagnosed 1997. Then never stopped hearing it after Hugh Laurie's character House MD!
I am a nurse.
Due to my profession, I am a nurse.
An excellent GP with long experience, spoke about a "suspicion of lupus".
i found it very rewarding to go out and fund raise for lupus uk after diagnosis. many people who came to our stand in south east wales valley area had the condition and were often bewilderd with the diagnosis. thiswas 2002. i was able to be very helpful to people to get themselves educated in order to interact better with their specialist. i also formed a local support group which was a positive influence to its members.
i had to go to a private dermatologist for diagnosis.
Online research of symptoms prior to diagnosis in 1996.
I was walking down the town and I saw a stand. I saw lots of words written which were symptoms of Lupus, I later learned. When I scanned the list, I realised I had all the symptoms and I stopped to talk to Mayne, David and the team.
When my daughter recognized my symptoms (she is a complementary therapist)
I listed my many symptoms online, researched extensively, finally concluding that this was what is probably is. After a massive flare up I consulted my GP who set the ball rolling, with appointments with rheumatology, dermatology and extensive tests being done. Still appears unclassified awaiting further tests and biopsies.
I first heard of Lupus in a book called 'when a baby dies' I recognised the symptoms straight away.
professionally but knew very little until diagnosed
Reading medical symptom books...I am a hypochondriac so to torture myself I look for potential health issues....
Online surfing
I typed in some symptoms I was suffering and it flagged up lupus on a Google search
I worked as an ob-gyn nurse, we had many patients with lupus who were pregnant. I didn’t do extensive research though until I was diagnosed.
I had a biopsy to my nose diagnosing Jesseners lymphocytic infiltrate I was told I may develop Lupus and surely I did in 2014 after referral and consultation with rheumatologist.
I hadn’t heard of Lupus until my husband told me he thought I had it.
A student doctor during a ward round in a teaching hospital suggested Lupus to his consultant!
I learnt about Lupus back in the mid 1980’s from a Lupus Charity poster in a supermarket.
When studying Aromatherapy and Reflexology in 1993/94
When I thought I had shingles in November 2017. My symptoms didn't match shingles, but something called SLE kept popping up on Google. Low and behold, the symptoms were like mine.
My 2nd sister has had SLE for years before she was diagnosed in the 90s and read/researched about the condition.
When I was diagnosed in 1999 after having to go through so many tests
My friend's niece had it.
No GP would take me seriously about my ailments, so googled found lupus ,went back to GP demanded that they took notice etc, diagnosed then at hospital
At my first appointment with my current Rheumy she recognised the malar rash immediately.
Stumbled upon it during a google search when researching my symptoms.
I had a rash all over, blood test at doctors and sent into hospital all in one day, oh and put into isolation then i was told its lupus s , l, e. I didnot feel ill however my platelets were dangerously low so had injection in my stomach, it was way back in 1989
Diagnosed after having an MRI following many years (30+) of symptoms including renal failure and transplant (MRI for bells palsy/ mini stroke).
I have a nursing background
I googled it after diagnosis.
When a family friend died if it
I was told when I went back for blood test results, they were positive for SLE. My first question was "is it life threatening?" as I'd never heard of it and had no idea what it was. The doctor reassured me it was mild and manageable with the right treatment
I was first diagnosed in 1996 after having feeling unwell for some time. I remember prior to be told, that I asked the rheumatology consultant if it was terminal. There wasn’t a huge amount of information at that time compared to now.
A friend of a friend's sister had it.
Her mother told me to see a doctor and was interested in a rash across my nose. Unfortunately she did not explain her concern and I didn't follow up with a visit to GP. This was more than 30 years before diagnosis
I knew about it as am a trained nurse
The rheumatologist consultant told me that I have lupus like symptoms when he saw my blood results. I was just 40 then. Have had ups and down been living with it for the past 25 years. Have managed to keep it under control so far.
It took 2yrs. After all kinds of symptoms and then finally a dermatologist recognised the butterfly shape rash, which for years I was told that it was acne. Back in 1986, Gps in Stevenage had to look it up in there medical books, because they either had not heard of it or knew very little about it!
Ps. My symptoms included blackouts causing, amnesia, so in al my symptoms had been on going for approx. 4yrs.
I looked into my symptoms some years back, but discarded lupus as my rash was not the typical butterfly one. Only now am I thinking there maybe a possibility this is the culprit, although I’m open to the fact that these auto immune diseases can be very similar in characteristics!!!!
The only real advice I’ve had from my gp, is that yes you have a disease but it could take years to diagnose. That was this year and I’ve had symptoms for 14 years 
I feel for you and completely empathise with your situation!💗
I used to work with someone who's sister had lupus
I was referred to a renal consultant after my GP had noticed an uphill trend in the rise of createnine in my blood. I told him that I had reynauds (don't have this now) something painful with my eyes (scleritis) & felt lacking in energy. He mentioned SLE & said he would do further bloods. I spent ages trying to find what SLE of the kidneys was, found nothing in it if course!! Tests came back positive, then the shock of being told what SLE actually was and that it was too late to save my kidneys & urgent sessions of IV chemotherapy needed start. 😬 yr 2000
When I started with joint pain and fatigue, chronic migraines etc aged 21years. Initially said it was RA but a few yrs on diagnosed lupus and aps by 2nd or 3rd rheumatologist!
At a healthcare career school
When I had a reaction to penicillin or carbamazepine the dr thought it was drug induced but turned out to be mixed connective tissue disease
I was in the local newspaper as non of the Consultants I had seen over 3 years know what was wrong with me. A local woman, who had lupus recognised my symptoms came forward & suggested for me to ask my Consultant to test me for lupus and it came back positive, my Rhumatologist hadn't thought to test me for it, even though I had all the classic symptoms and that was 26 years ago and I am still fighting it.
I work in Hair loss and first time That Id heard was from my work in hair replacement. The ironic thing is that I was diagnosed this year with lupus.
When i was diagnosed with livedo it was mentioned about ' lupus then I thought glad it's not that I've got.
A very close friend was diagnosed. At the time is was devastating life altering news.
After two hospital admissions in 1982, I was told by the renal consultant that I had lupus and I replied 'What is that?'.
When I was first diagnosed after 6 years. I paid privately saw a Rheumatologist for the first time and was diagnosed with in 2 weeks. That was in 1991. I was 34.
Watching House on tv where “it’s never lupus”, now know that sometimes it is.
Had Sjogren’s for about 7 years, then admitted to hospital struggling to breath just over 2 years ago and diagnosed with lupus.
Through health unlocked after desperately trying to find what was wrong with me ( originally thought it was thyroid) I was checking the internet and found you wonderful people. I was able to go back to my Doctor and request further testing. Now diagnosed with UCTD, inflammatory Arthritis , chronic pain syndrome, Raynauds & Fibromyalgia amongst other things. But without health unlocked I would have been waiting longer than the 4 years it took for a diagnosis. Thank you Health unlocked x
I heard about Lupus when I was studying as I studied to be a biomedical scientist and ended up working in hospital laboratory. At one stage I even did the ANA tests for people
I had just had my daughter in 1997 and the health visitor came round as they do to check the baby and asked me if I had Lupus as I had such red cheeks.
I first heard of Lupus when I was 12 years old and I wouldn't be diagnosed for another 16 years due to other conditions I had at the time. I first heard it when a doctor suggested I may be suffering from a lupus like illness.
My GP thought I had an allergy until 6 weeks later when it covered my whole body, my connective tissue dissease was worse, and I felt really ill. He sent me immediately to a Dermotology consultant who diagnosed Lupus immediately.
Through my rhuematologist.
I read about it years ago
I had no clue what it was. Even my 1st appointment with the rheumatologist, it was abit vague and fuzzy. It took 4 weeks addmission to understand what was happening. Even my nurses and junior Dr were not to familiar with the illness.
I'm a nurse and have looked after patients with lupus, before I got diagnosed.
google I self diagnosed before the DRS agreed I had it x
I first heard about lupus when my symptoms were being investigated. I had been carrying out research in an attempt to explain what I had been experiencing as I felt it was more than my diagnosed fibromyalgia as I was losing hair and had rashes.
I grew up hearing stories about how 'lucky' my mum was to be diagnosed with SLE... She was living in the Shetlands in the 50's and my Gran had taken her to the local GP several times and been sent away saying she had growing pains. Finally my Gran had enough and went back but the GP was on holiday and the locum happened to have read an article on Lupus - A relatively new and unknown illness the week before and recognised the symptoms. I was diagnosed at 40.
When I was diagnosed with Hughes Syndrome.
My grandfather had it-he was diagnosed too late in the 70s and died just before I was born. Consequently I have known about Luous all my life from the rest of my family.
I was a student dentist and learnt about lupus mimicking other problems
Being told by Rhuematology I had Lupus in my DNA
My GP told me she thought that was what was my problem before I was diagnosed by my Rheumatologist.
Gp confirmed Lupus after having pneumonia
i knew about lupus being a nurse
I was searching for answers for the rash I was experiencing online, my cousin was diagnosed then my gp mentioned it to me
Unfortunately for me, I'm also a medical Dr and so first heard of it in medical school.
