My poor daughter :-(

Found out today my 23yr old daughter has been diagnosed with early stages of Lupus. So sad. She's got 1yr old twin girls. You feel guilty when you pass on rubbish genes to your kids. But I've got 7 children so I have been bracing myself for one of them to suffer like I have. At least it's been recognised and diagnosed early. I had to wait 23 yrs for my diagnosis.

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  • Really sorry to hear this funkymumma, but it's so NOT your fault. No one in my family ever had lupus & now I've got it ,& my sister has just been diagnosed with MCTD, so it looks like she's going down the same route. It's horrible to watch some one you love suffer, but at least you know the territory, so to speak.

    My personal belief is that many of us carry the dodgy gene for lupus, but it takes a trigger for the disease to start. There are so many more triggers out there now with stress, pollution, pesticides etc.

    I very much hope that her early diagnosis will mean that the disease can be kept under control as much as possible.

    Very best wishes to you both. X

  • That is true. There are many people with low levels of the Lupus autoantibodies that don't exhibit the disease. So I think you may be right about the trigger theory.

    Thank you for your kind words. Hope you and your sis keep well. x x

  • I could not agree more, just be there for her that will be more than sufficient.

    Good luck

  • agree with Roobarb, No 1 going back as far as we can trace had anything remotely like lupus in our family, but guess who was born with a faulty gene.....? Yup, little old me! My 2 little 1's haven't been tested 4 lupus or any other autoimmune disorders, & nor will they b unless they start displaying symptoms. It's just bad luck but hopefully, as it has been diagnosed at the early stages, & the fact that she is aware of it having seen what u go through, she'll b able 2 keep things under control. The best of luck 2 the pair of u :0)

  • Thank you Sher x

  • I am interested to read this as my daughter is showing signs of Lupus and I have had auto-immune issues for a while. She has not been right for 2 years, since her Grandad died. She kept getting illnesses that where diagnosed as viruses then she tested positive for Glandular Fever in August. All this time she has been doing GCSE and A levels so her stress levels are high. Last week the GP diagnosed depression. I can see in her symptoms of Lupus type illness and coupled with my diagnosis am seriously worried she has it. Is there a familial element and do you think I should ask the GP to do bloods or should I ask my Rheumie next month if he should see her?

  • If you suspect she might have the first signs, then yes get her checked. I've had it since I was 17yrs old and got diagnosed at 40. My Mother has several autoimmune disorders and my youngest sister was diagnosed with M.S. at 34. They say it is often the case that an acute viral infection can trigger an auto-immune disorder. Ask if she can have an autoantibody titre for lupus. Good luck and let me know how you get on x

  • My mother had lupus she died when I was a child. I was diagnosed 4 years ago with lupus although I think I had it for about 6 years before I was diagnosed. My daughter is showing all the same symptoms as I had in the early days before my diagnose. I don't blame my mum I just feel sorry when I think how awful it must have been for her. Back when she had it there was no Internet, no support groups, and most importantly there was no rheumatologist in our area so she was treated by her gp. When I find myself worrying about my daughter I remind myself about the advances in meds and all the support lupus suffers have now and imagine how much things will improve in the future.

  • I know what you are saying. I got given all sorts of drugs for other things before one 'lazy' Dr....who is known to refer you even if you turn up with a broken nail - referred me to a Dermatologist. Even she didn't diagnose me and referred me to someone else. Then I was told.

    We really should be getting closer to finding out about auto-immune diseases. We have the technology and the brains. I get very frustrated at how slowly medical research actually moves, particularly as we have genetic mapping now and a greater understanding of Immunology (a complex speciality). I'm an ex-medical research scientist, so don't get me banging my drum on that one!

  • How awful for you FunkyMumma. Autoimmune diseases do tend to run in families. My mother had RA and my late sister had Lupus. Even my little grandaughter has patches of Psoriasis, which i believe is linked to Lupus.

  • i hope to god none of my children or grandchildren get this illness. its so heartbreaking

  • At least you will be there to help and advise them. I had no one. x

  • Hi Melinda. I think you are right. I have tiny patches of psoriasis as well.

  • Hi, I had twin boys and an infection from the c-section triggered my Lupus and Fibromyalgia so we are in similar situations. A few suggestions for her l, find out if she lives in a sure start area, your GP or health visitor should know. They helped us by funding two sessions in a nursery for each child per week until they turned three then early entitlement kicked in so was funded by them. A national group that your GP can refer to is Homestart. This is where you get a volunteer come into the house for two hours a week to play/ help with the boys.

    This is a big one I know but it really helped me as I became so bad I could not return to work. My GP refered me or you can ring and ask yourself but they will still go to your GP (not the children) to social services. I was assessed and given things to help me with everyday life. As I got worse I was given funding and help to employ a carer she now comes in for 17 and a half hours to help me but helps with things with shopping and meal prep. It's not a quick fix but a light at the end of the tunnel might help. Her carer will have to have an enhanced check due to the children being in the house. When the children reach 6 they can join the young carers. Ours is run by Barnardos and they go on outings and do crafts and games. They even get to go away for a few days.

    My social services (Flintshire in N.Wales) had never had a situation with an ill person with young babies (my problems started after the birth so very young) so it was a steep learning curve and with health and safety and legal problems (like having a stair lift fitted but I suggested I sign a form to say that I would not sue them if anything happened to the boys and putting the keys on a hook so they could not reach etc) ask your health visitor or look on the TAMBA website for twins clubs in your area. The members I found were a valuable source of information and suggestions on anything to do with twins.

    Lastly if I can be of any help at all please get in touch, I don't know where you live but if its anywhere near me then I could give her the local phone numbers for groups etc.

    please don't feel guilty as nothing you could do would make any difference to her having Lupus. Mine came down the male gene as since I have been diagnosed I have found lots of my cousins have lupus or Raynauds etc.

    Hope some of my suggestions help best wishes to you all Helen

    hpaytonjones@aol.com

  • I hope your daughter gets the support she needs?My mum sufferd autoimmune disease ,M.S!she passed at the age of 56yrs ,but from cancer ;(she had an array of medications ,which obviously helped pain ,she had a good team of carers including my dad ,but one thing she never did was express her pain or torment by this disease in the right way.she didnt go to support groups or talk to other fellow sufferers ,her neurologist would just give more pain meds.She never tried any lifestyle changes to assist in managing disease.She never accepted this disease ,she just became very deep and dark and shut down from everyone and came across as awkward ,i myself analized her moods ,i wish i never did looking back ,she must have been going through turmoil?I have sufferd since my late teens and always knew that something wasnt right ,spent 16yrs pushing for answers and finally lupus/mctd was diagnosed ,with overlap fibro ,sjogrens and im sure more?i dont tolerate meds and feel paranoid docs and consultants look at me as if im going mad.Well my point really is i wish for your daughter a good support network ,i wish for all of us a good support network ,i do not feel i have one ,and feel even family raise their eyebrows at me because to them i still look pretty normal and thats how most people are with this disease ,if only they knew?i see a big change when i look at photos ,but unless were crawling on hands and knees we do not get the recognition we deserve ,it sucks;(good health all the way to you and your daughter ,best of health for 2013,brave;)

  • Thank you very much for sharing that with me. Yes, you do go into denial and become withdrawn, as the daily obstacle of coping with the illness can sometimes overwhelm you.....and particularly when you do look 'normal' and not particularly ill. Some people think you enjoy being a professional patient and just like seeking sympathy. I can't think of anyone in their right mind who would do that. If only they could find a cure soon enough for us, but it would probably be too expensive and not widely available on the NHS (usually the story due to ruthlessly greedy drug companies).

    Thank you for your kind words about my daughter. I wish you a positive 2012.

  • I unfortunately was only diagnosed at 31 and by this time the doctors thought I was making it up. Hope she gets through it. And like you, I know how she feels. Sometimes the children may keep up her spirits. Hope she has someone to help in the hard times x

  • Thank you Moira x

  • Although lupus isn't 'hereditary', it IS genetic so there's a chance that if the lupus gene isn't passed on, the gene of some other autoimmune illness will b, whether it becomes apparent or not & in all honesty, as Lupus suffers, who better 2 recognise the symptoms & signs in others?

  • Hi, like others have said it's not your fault, but I can imagine how it feels, I have concerns about my daughter. I believe that there is a genetic component, but that it needs a trigger to set it off. For me it was the birth of my second child. I hope that your daughter can get support, how is she managing with twins? I agree that it is good that she has been diagnosed, wishing you and your daughter all the best x

  • I think giving birth to 6 children in 9 years and contracting chicken pox and shingles when 7 months pregnant with the 6th was enough to send my immune system into overdrive! Then if that wasn't enough punishment for one person, I had another by emergency c-section when I was 44 and brought home the gift of an open wound and MRSA....which they failed to notice for 2 weeks even tho I was quietly dying!

    My daughter loves her little twinnies. They came round today and are so funny to watch because they've learnt to walk and follow each other everywhere. Thank you for asking. I have spoken to my Consultant Dermatologist who is managing my Lupus and he said she is welcome to change Consultants and be referred to him. x

  • i still feel my symptons conected to endro but real problems started years later when i broke my leg(something else i didn't know about TRIGGERS).I sort of know how u feel funkymumma as my duaghter has endro but she shows signs of lupus too and just been diagnosed with psorasis my heart is breaking for her and your daughter too and really hoping some clever dick is going to find cure real soon like tomorow x

  • Know how you feel. One day they will screen everyone. I think we should all see our genetic weaknesses or proclivities in bright technicolour. It would then make us a lot more serious about our health, which we all take for granted until something goes wrong. Life without good health is harder to live. x

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