Lupus in the family

I was diagnosed with Lupus last year and just found out that my cousin has also got the disease and has had it for 18 years, but the thing that has made me more concerned is that two of my daughters also have it they say my oldest daughters is dormant at the moment (she is having no symptoms) while my other daughter is still going through all the tests but sees a rheumatology doctor every six months and she has does have Lupus but hasnt had a flare for at least two years (she has the rashes, and UVA sensitivity). does anyone else have family members with lupus and how do you all cope

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  • My Aunt was finally dianosed with Lupus after many,many, many misdiagnosis's.That was many year's ago and I like to think Doctor's are much more aware.I was diagnosed about three year's ago now after many flares(which I was totally unaware were related at the time).Finally after the butterfly rash,apparently common with Lupus,kidney complaint's and finally blood test's and skin biopsys,here I am a Lupee.You rely mainly on keeping yourself informed and hopefully a good GP and hospital i.e.reumatologist and if you are luck St.Thomas's who specialise in Lupus related problem's.It is scary but,you will cope with it,just make sure you have somebody that understand's.

  • My grandmother was diagnosed with lupus first, back in the 1980's at the ripe old age of 73. I was then diagnosed in 1990 at the age of 20 and my mum was diagnosed with Hughes following a massive (eventually fatal) stroke at the age of 63 back in 2004. We all donated blood to a genetic study back in the 1990's which I believe hinted that there is a genetic link. I agree with Binkey - find a good GP and rheumy and keep pestering - she who shouts loudest.......

  • after years of being ill and having my gp tell me stop being lazy, its all in your head and not being able to explain my symptoms I did start thinking it was going mad, but last year after constant complaining about my knees they sent me to see my rheumy doctor only about my knees and she asked me all these questions and I was with her for a good hour and half, and she decided there and then it was lupus without even a blood test which later came back as positive but just the relief of knowing i am ill its not my mind playing tricks was a relief the only thing that upsets me is the fact that my daughters also have it they of course are not as worried because they said we can all sit on the sofa and slouch out together when we are not feeling our best, Im still learning and finding things out and Im not as worried as I was when I first found out, because what will be will be..................but im not going mad and just take one day at a time now..

  • I was diagnosed at the age of 17 after a persistent effort to convince GPs that my problems were more than just growing pains. Arthritic type pain was a part of my everyday life at 16 & the butterfly rash was clear on my face but I was told it was acne. I consider myself lucky but my cousin who did not have the right help was diagnosed after suffering a stroke at 14 & ending up in a coma! GPs even now after all that is known about Lupus have a hard time believing a patient.

    It's not in our minds. I agree with Binky & welshexile. It certainly is a case of he who shouts loudest...

  • i am 40 yrs of age and was dianosed with lupus 11 years ago. My mum has been complaining for years about most of the symptoms I had apart from the rashes but never diagnosed. At the moment she is not very well and I honestly think she has lupus

  • I also have had lupus for about 11 years. I also have an overlapping problem with rheumatoid arthritis. The lupus affects my joints and skin. My late sister also had lupus and i have an uncle with lupus. My mother had ra which is linked to lupus.

  • I tried to tell my doctor for years that it wasnt just depression after he told me I was being just plain lazy and staying in bed wouldnt help when I was finally diagnosed it was a great relief in one way but then very scary in another way.............I think the more us lupies tell people the more people and doctors get to learn more about it.............every time I go to see my GP now he just puts his hands up in the air and says I know nothing about Lupus, so I told him he best xx

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