OOOPs what have i agreed to!!!!

In a moment of insanity i have decided to agree to present a patients view point of what its like to be a patient with lupus to a lecuture theater of 150 trainee gps along with three international speakers on lupus. dawnted YES.

i already have palpitations and high blood pressure.

yeeeeeek scary what have i done.

i always did want to be on the stage when i was little but im not little anymore.


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33 Replies

  • Good for you!- Give it to them straight!

  • Keep your "insanity" and go of luck..

  • Good luck :)

  • Good luck tatty!

    Please will you tell them from me that they must take hair loss seriously! I had many blood tests at my GP's mainly just for thyroid function and they told me every time that my thyroid was healthy! Meanwhile I lost most of my hair. If they had identified lupus I would have still had most of it and would have felt better into the bargain.

    I am so pleased that one of us has the opportunity to educate them!! LOL!

    Just go out there and enjoy it! You might get a BAFTA next year........LOL!

    I hope it goes well.

    Margaret x

  • Hair loss is a very serious problem- perhaps it's vanity but before I was properly diagnosed my hair loss was a much more important issue to me then my drs- they were more worried about the 30% kidney function :)

    e x

  • thanks for the encouragement, will do re hair its not till march so have a bit of time to prepare and three lupus specialist one from the states are teaching tooo.

  • Thank you :O) x

  • Good for you!! And remember if you are giving the presentation you know far more about the subject than they do!!

    Please could you mention that some lupies get diagnosed when they're older (56 for me) and not all lupies have rashes!

    Very best wishes and let us know how it goes. xx

  • Can i be cheeky is it for the general public aswell, I havent been to any meetings ( i was diagnosed 2yrs ago) it took me awhile to accept my situation but still want to learn more. Good luck i thiink to see a person who has a condiation and dosnt tick all the boxs is easier to remember and learn from than from a text book .

  • Have you thought of going to one of the many regional Lupus groups set up by Lupus UK. They're a great source of information from other "lupies" I've learned loads since going to ours. There's also a DVD available to spread the word to new-ish diagnosed and their families. It's really good. I highly recommend it to anyone who has or knows someone with Lupus

  • Have you joined LUPUS UK? If not do join. It doesn't cost much and for £10 you get lupus magazines, details of the annual conference and the regional groups. There are also local contacts who you can phone and talk things over. They are trained to listen and give information.

  • Good Luck Tatty :) you will be great, just tell it how it is mate, and you can't go wrong:) well done you for doing it :) I am very proud of you for doing this on behalf of us lupies, so thank you :)

    Take care of yourself and dont get stressed, Mandy x

  • Hi Niks b sorry medic only, have you tried lupus uk local group ours has a medical meeting a couple of times a year with guest consultants talking on different topics, very informative. by the way it took me two years to accept my situation too. i think its apart of the grieving process.

  • Go. Tatty it's a wonderful thing that you are doing- show them that we are humans not just case studies : )

    e x

  • Remember you know more about Lupus than they do,prepare well and give it to them as it is.

    Tatty it took me a year to get my head around lupus,then I joined Lupus U/K and our local Group and got involved,the best move i've done,I have made so many friends and we meet about 4-5 times a year and I can for those few hours, be Me,no putting on faces for them to see,because they are just like me.

    LupieLupusie.If you have not joined think about it!!!

    let us know how you get on.

    Love & Sunshine


  • What a great thing you are doing raising awareness from a patient's view. All the best with it! x

  • Thanks tatty a meeting hasnt come up yet ive only just joined lupus uk. Good luck and you are sort of talking for all of us so no pressure hey, seriously they are gps dosnt mean they could present any better and you know your subject so your floor them.....

  • i'm actually getting quite excited about it, a friend is going to help me down load a lots of different images on to a memeory stick, like of the things i use to be able to do like hill walking. traveling. and thing like hospital waiting rooms, but going to try and find some immages that convay how emotional the journey is.

  • I am a taking my book 'Living With Lupus' by Philippa Pigache with me when I next see reumatology.When I had asked specific question's on my last visit(never mind previous times)regarding my allergic reaction's (extremely bad one's)to insect bite's and the aftermath that seemed to follow being bitten i.e.chest infection,urine infection and extremely bad joint pain's(,this book has been put together by expert's on Lupus) thank fate,I have read it, it is actually a very informative book for Lupus sufferer's.Good luck.

  • I am new to Lupus UK diagnosed Nov 2011 after having a very painfull summer with my eyes. I have felt completly lost and now I am taking anti-depressants whilst waiting in the queue for counciling. There are people alot worse off than me what am I moaning about . It has been nice to read other peoples stories, they have helped.I need to find a local group, not sure how to go about it though.

  • Hi janetd,

    What area do you live in? I can then send you the details for the group nearest to you.

  • Hello Paul, I live in Gillingham Kent in the Medway towns. Thanks for the help.

  • try ringing the office and they will put you in touch with your local group.

  • Thanks Tatty, it looks like Paul is going to sort me out.

  • This kind of chance to hear from the patient herself is so important!

    I have met rheumatologists who place too much emphasis on the lab reports on paper and not enough on hearing the patient descrtibe the symptoms of the disease!

    You have a chance to make an impression on these young doctors that can have a huge impact on them and how they will practice rheumatology ! I, too, would be nervous but try to remember how much good you will be doing for all of these doctors' future patients!!

    I wish you the best luck with your presentation! I think that you will feel very proud when you have completed it! . . . and you should be proud!


  • P.S. Janiceray is right; you DO know lots more about lupus than they do!

    Keep that in mind as you stand before them in the lecture hall ! :)


  • P.P.S. Marypw said the same thing, too!

  • thanks for all the encouragement am now looking forward to it. only have 10 mins for the talk and ten mins for questions. but the corrilation between syprtoms and lab tests is one i am going to bring up. my ESR is always normal even when im having a flare. its not a good indicator for me.

    its onlt a month off will let you all know how i get on.

  • have u eva had "abnormal" bloods

  • Good luck tatty - sock it to em! xx

  • Good

  • hi moss lots of my other bloods are abnormal just not esr

  • Good luck!! It's good to spread the word about Lupus in all its forms :). x

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