Before your diagnosis, what was your level of awa... - LUPUS UK
Before your diagnosis, what was your level of awareness about Lupus?
Paul_HowardPartnerLUPUS UK299 Voters
Most of the information I gained was from books from America as little was known about the condition in the UK.
i had never heard of it until i was told i had it. Even then no Doctors informed me as to what it was and in what the symptoms were and if there was medication for it!
Was seen twice with the second occasion being discharged.
I was diagnosed 36 years ago when nobody knew much about anything! My sort of lupus had just been identified.
I grew up in America and in the early 90s there was a soap opera that had a storyline about Lupus. It was One Life To Live and the character was Megan.
I posted too soon - meant to add that I have SCLE (subacute cutaneous) and also technically an SLE diagnosis although skin is my main concern. It t Ias 26 years before I got the right sort of treatment although that was partly because I was living abroad and one of the essential drugs was not available in Europe where I was living.
I had only heard of it because my late sister had it. Even so i did not understand that it was an autoimmune disease and it was linked to my mothers rheumatoid arthrits.It also didn't occur to me that i might also developed lupus.
Melinda, Did your late sister die of lupus? I am very sorry for your loss! No I did not understand much. and I worked in the medical field. It was like no one ever talked about it, It took forever to figure out I had Systemic Lupus. MY grandma who I never knew died when she was 39 years old. They supect she had Lupus. Hang in there!! Love, Krisdy
Krisdy. They did not know my sister had lupus, she was being treated for something else. Had they known she had it, i'm sure her death could have been prevented. But this was the eighties when lupus was unheard of. I was told when i was diagnosed, what happened to her was very rare.
I'm so sorry for your loss. Sisters are meant to be our life long best friends. I don't believe a diagnosis of lupus would've likely sustained your sister's life in the 80's. Mortality rates were still incredibly high for surviving only 10 years past diagnosis IF you didn't have reoccurant organ involvement. Apparently back then they would only treat symptomatically but not for the lupus itself. Today we know to do both cutting our mortality rate significantly.
Not too sure whether or not it was a good or bad thing, but I was fully informed about Lupus (SLE) before my diagnosis. Nine people in my extended family all have it, and other related diseases/illnesses too.
Although I felt permenantly fatigued and my hair was dissapearing before my eyes I had no idea what was going on and neither did my GP's. (I saw several) I put up with the tiredness and was very concerned about my hair. I was tested for thyroid function and told everything was ok for years. I was eventually sent to the hospital after 15 years and now 10 years on I am feeling better and although I have a flare now and again I actually feel tons better on the medication. I gained most of my knowledge from the internet and now I understand it I am confident to discuss it with a consultant. My GP has minimal knowledge of this disease and will not advise me. They have said they are not trained to understand it, and that I most likely I know more than they do about it. GP's should have more traaining and experience in these matters. I would have not suffered for so many years and would still have most of my hair if they had had some trianing. It destroyed my quality of life for years. They did not even recognice my lupus rash and that is sraight forward to diagnose. :O)
I worked in insurance and developed a product which paid out upon diagnosis of SLE, and meeting certain criteria (ie having a certain severity of the condition). This was before I had any inclination that I was unwell.
Ironically I didn't buy the product for myself, and now, here I am with lupus!! Hey ho!
I had never heard of it until renal doctor mentioned it to me after yet another appointment in yet another clinic and another hospital! I looked it up, did the research, took all the information to my GP and demanded the blood and serum tests. Low and behold they came back positive for Lupus!
I had been ill for so many years, in and out of hospitals and finally had proof that I wasn't a fake and a bed hopper as was written in my hospital records!!!
I was diagnosed 22 years ago when I was a young student nurse and after the haematologist told me what I had I went straight to the hospital library to find out more. Was shocked to read of mortality rates but I'm still here and learn as I go along. Joined ARC (before Lupus UK) which helped with up to date info.
I vaguely remember reading a story in a magazine many years ago,but I never thought no more about it until I was diagnosed with SLE Lupus .The amount of information I had regarding Lupus at that time you could have placed on the back of a stamp.
I have only recently been advised as having 'probable lupus', and after reading the LEAFLETS (Printed by charities and not the NHS!) given at the hospital visits, I can identify with a myriad of the symptoms. I did not know anything about lupus, I think I knew about the skin condition. I have been too frightened to research lupus properly, until recently. I have been amazed at the comments on this site, it is just as if I have written some of them myself. This has been invaluable to me.
Having the internet to rely on is a true gift when you're able to see others experiencing the same things as yourself. I had my first few years without the intetnet but I remember when the first board went up I cried because someone else gound it difficult to wear underclothes while on steroids as well! I thought I had gone insane! What a relief to know I wasn't going nutters with all that was changing. Especially when the other side effects took hold! Courage on, warrior!
As a nurse I knew about it and was aware of key facts but would not say fully informed as this was not my area of practice .
I was diagnosed with MCTD,by a Rheumatologist in 2007,whilst still living in South Africa, and began treatment for RA. My GP and dear friend looked at my swollen painful feet and ankles and said "you know I think you have Lupus" It was left at that because the Rheumy hadn't mentioned Lupus and after all I fell under her now.. What did I know. On coming to live in the UK,and after being really ill for months, my Rheumatologist here diagnosed Lupus. I believe I had it all along and it was "overlooked". I was sent on my way with additional meds and no information. I found out all about Lupus on this sight and have been encouraged by all the posts I read.
I was diagnosed with lupus in 2006 after years of fatigue, rash on face nd breathlessness. I had only heard the word lupus on a gospel CD but did not know what the illness was about. In 1987 I was pregnant with my third child and started to become very breathless and very tired. I was told I had a heart murmer and that was the cause. After I had my baby it all went worse as I was so tired I had to pay for a helper to just sit with the baby and toddler while I go back to bed for a couple of hours in the day so I could look after the children and house for the rest of the day.
My GP at that time did lots of tests and said he couldn't find any thing wrong. Eventually I saw a chest physician privately who said I have asthma., even though I was always fainting along with the breathlessness. I asked to see someone else as my husband then though I may have ME. I was then told it was ME.
I think I have had lupus since I was a child as I had all the symptoms from then. The rash on my face and on my exposed skin each time I stayed in the sun too long and lots more.
Only heard about it was from an old Arthritis care book.Rung them and they put me in touch with Lupus U/K.
In the early 90s I was working in the media and we were sent a batch of new leaflets from this charity to promote. I think I must have been off sick at the time because I remember my boss ringing me at home to say she had read one of these leaflets and my symptoms sounded like Lupus. Until then I was being treated as someone with sporting injuries as I developed severe symptoms when I was running lots of half marathons a few marathons (late 1980s). After several years of tests, my Consultant (a specialist in sports injuries) referred me to a Rheumatologist who did one blood test - bingo! At last I had a diagnosis but by this time I could hardly walk so had been allocated a disabled pass so that I could drive virtually up to the office door! I found out about Lupus UK because my mother read a personal story in a woman's magazine and there was a mention of the group at the end. I wonder if the people writing these leaflets and articles realise what a big impact they can have. This was particularly true in the days before everyone had the internet. In those days the dated medical books effectively said "no cure, no hope".
I heard the word Lupus on some TV show a few years back - the word just sounded strange. Never gave it another thought. Then I stumbled across the word again when it was written on my diagnosis: Class V Lupus Nephritis. I disregarded the symptoms for two years - I've always been arthritic and I had never thought of fatigue as a symptom.
If I only knew!
I learned all I know about it from the Internet.
I have known about SLE but not DLE, until I was diagnosed app. 7 yrs. ago and had inconclusive blood results.
Before my diagnosis four years ago i had no idea what lupus was, i was informed by post that i had sle lupus then sent to see a rhuematologist he gave me a leaflet and said do not go on the internet.
He also said he felt more sorry for people who have rhuematoid athritis.as they have very painful joints.
I have since learnt a lot more about my illness thanks to the internet.
When i was in hospital he came to see the lady in the next bed to me and did not even acknowledge me,this just shows that he does think more of his patience who have arthritis.
I also have arthritis and when my gp sent me back to him he said your doctor could have done this injection,
I thank god for sights like these.
I think I'm right in saying that you can now ask to see a different consultant. I made a complaint about one arrogant Consultant (who treated me for a non-Lupus related problem) who ignored all the other doctors after I was rushed to A&E and went with his own hunch, which proved to be totally wrong and delayed vital surgery. I was later told by the hospital that I could have asked to change Consultants if I'd wanted to. (Not easy when you're in pain but nurses have been told you're getting better!!)
Part of the problem with Lupus is that we can feel ghastly but look OK. At my worse I had to rest after putting on each item of clothing and my muscles were so weak that I didn't have the strength to turn my head on the pillow at night, yet I tried to carry on as normal in the day. Someone said to me, "When do you get the pain?" and I suddenly realised that no-one had appreciated that I was in pain all day, every day. There may be more intense pain with other conditions (even pain with Lupus varies) but a doctor who doesn't try to understand what it is like to live with Lupus is in the wrong job.
Don't let these inconsiderate doctors get you down, there are some excellent ones out there.
Had heard of it 6years ago,The word came up when i was diagnosed with Livedo reticularis,,but was told nothing to do with Lupus!!So annoying really as if it had a lot of the scarring i now have could have been treat earlier!
Hi I am new to lupus health unlocked ,I never knew what lupus was until I was diagnosed last year it is good that lupus UK is bringing awareness to lupus.
I had heard of lupus my late mother had it she died in 1968 when there was little or no treatment for it she was 46 and I was 10 years old. I still can't believe I was diagnosed with sle almost 4 years ago. I often think that maybe I brought this illness on my self because I've thought so much about my mom having it through the years.
I just have to say, never blame yourself for getting Lupus. You have had to deal with losing your mum at a young age and that is tough enough.
A hyper-critical "friend" read somewhere that Lupus was a "self-allergy" and so asked me if that meant I had brought it on myself! I did push myself, taking on lots of projects and exercising a lot, but so do many other people. I have several theories for what might have triggered my Lupus but could never blame myself. What would be the point anyway?
I feel so sad that your mum had Lupus at a time when effective treatment was probably virtually non-existent. She must have worried about leaving you behind and wouldn't have wanted you to go through what she must have suffered.
Things have improved dramatically for Lupus patients in the last 25 years and it seems that researchers into various disorders are learning more about the immune system so I'm hopeful that treatments will get better. Be positive and be proud of your mum - her memory should give you strength when you need it. Take care.
I am sorry to hear of your mom's tramatic death. What a loss to shoulder at that age, or any age as we need and want our mom's during events in our lives. You, of course, know you didn't bring this upon yourself but that it is passed by gene in families with history of connective tissue disease. When I get sad about having it I think of that side of my family I 'inherited" it from and see it as a badge of honor if you will for being a member of that awesome family. No matter how bad it gets, and it does, I wouldn't give up being in my family to be healed. They are woryh every struggle. I hope yours is like mine, because so many have arthritis they are all very kind about my illness. Always asking about me, etc. You carry on with the strength your mom gave you. Cry to her, talk to her, she after all understands. Perhaps you'll see her answer in a butterfly and know she's watching over you still. Many blessings to you.
I had never heard of it. Was quite glad when I was given a reason for feeling so rough. I was fearing cancer as I was so exhausted all of the time.
The consultant that delivered the diagnosis was positive about what it meant. But I didnt really ask too many questions. I was told it was treatable and that was a better outcome for me than being told I had cancer. I remember thinking that all was ok because if it was something serious it would be known about by everyone.
I didnt really understand that it potentially has its own arsenal of goodies to aim at you.
I didnt know it is genetic,, I am shocked, my sister has MS and I have lupus. I am worried now, my sun had Shingals, can it be That he has lupus. I am soooo shocked, my Dr. SAID it is not genetic. I am really confused now. 
Lupus is not hereditary but it does have a genetic component.The following is from 'The Lupus Book' by Daniel Wallace M.D,
"If you have lupus, members of your immediate family, or first degree relatives, are at a slightly increased risk for developing it too. Several surveys have estimated this risk at 10 percent for your daughter and 2 percent for your son."
Had been treated for Rheumatoid Arthritis for about 8 years, consultant just prescribed anti inflammatories which have now caused problems with my stomach. Only diagnosed my chance on routine hosp appt with Rheumatologist 2 years ago as had protein and blood in urine - by that time had severe Kidney damage. Thinking back and now l have learnt about the illness l had at least 4 of the classic signs including a rash which were all ignored by my Consultant. Just wish l had been more aware then about Lupus as l would've pushed to be teste a lot sooner , then maybe it wouldn't have damaged my kidneys if treated earlier. Now l make a pint of educating myself on every aspect and spreading awareness to others ( including Consultants)
I had heard of it, but didn't know anything about it.
I had heard of it but had no idea what it was.
My mom had a friend with it while I was growing up. She was a lifesaver when I was dx during my pregnancy. Sadly, she died within a year of her becoming my mentor. It was a difficult time as the internet wasn't open as it is now to gain information and books where grossly outdated with high mortality rates. USA, dx '94
none. I was quite young when diagnosed and I never heard of it before. I have just been signed off and been told my lupus is no longer active.
I am very aware how serious lupus can be as my mum had it for 25yrs she died due to organ failures.At the moment i have many symptons but only have high ANA so rhummie has dx UCTD.
Nil and none of my friends had heard of it either. Had to look it up in a medical dictionary in the library (30 years ago). To this day, very few lay people I mention it to have heard of or have any understanding of the disease. Worringly, quite a few medical professionals - ie. physiotherapists, occupational therapists, mental health professionals - still don't have much understanding of it either!
I was diagnosed in 1998, before then I had never heard of Lupus. I had to go to a library to find out information.
