the best place for info

Hi all i have just been told i have lupus after almost 3 years of going backwards and forwards to the Dr. I was told that i have lupus sle given medication an information book and told i would be seen in 3 months im a bit shell shocked ...But now i no what is wrong and why i feel like i do i have lots of questions ,my children have lots of questions but i dont have the answers for them or for me ..im also a bit scared x

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  • I am from the UK and have only just registered with this site. For me, I found the information on lupusuk very useful indeed (www.lupusuk.org.uk).

  • When i was told i had Lupus I like your self knew nothing, I rang Lupus u/k and they sent me information and who to contact in my area it was so good to talk to some one.

    Lupus U/k has a DVD out to help you and the family understand the very essence of Lupus.

    And its also helpful to become a member of Lupus U/K as you get a news & views and also a news letters from your area group and maybe go along to meet them.

    You take care and remember it takes time for you to get your head around living with lupus but you will

    Love & Sunshine

    Janx

  • Hi the mum, you must be very shell shocked and it's hard to get your head around. But I agree with rayNgai check the lupus uk site its very good. you can always ask questions on here and also there is a group on facebook called lupus is real, were you can ask question, chat, moan, and have a laugh. I hope you get the answers your looking for, take care, Mandy x

  • Hi themum,

    If you'd like I can send out an information pack for you to read over? I'd also recommend our new DVD and handbook for those that have been recently diagnosed. It is free, but we ask for £2 to cover the postage and packing costs.

  • Hi paul tha would be brill !!!

    Thank you

  • i know the feeling its very difficult trying to understand, i asked lots of question (to myself also, like WHY ME??) Give yourself time to adapt, surround yourself with family and friends and just give yourself time, i still question it now and its been four years. Good has come out of it after four losses i had my little boy with treatment he is my angel i have SLE and Hughes. I hope you can take time to relax and enjoy christmas take care

  • hi all, thank you for your answers its nice to no im not alone!! Merry christams to all and a very happy healthy new year x my friend came round today and we was chatting about lupus and she asked me was it was how do you explain it in layamns terms as i seemed to confuse her more than anything else!!

  • Hello I thought I would just add to this as I have just set up a site that explains Lupus very simply, it's called KALA (find us at kalauk.org) Kids Against Lupus and Arthritis. I hope you are coping and that we might be of some help.

    Best wishes

    Eve

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