Anyone know of any child friendly Lupus information out there?

Does anyone know where I can find some child friendly info on Lupus? My 11 yr old has been really sensative and tearful recently and told me tonight that 'Its hard having a brother with autism & a mum with Lupus' :-( apparently its been upsetting him at school cos people keep making 'your momm' jokes and a girl he sits withs gran has lupus and shes been googling 'can you die from lupus?' breaks my heart to think hes worrying about things like this.

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  • Hello I run a site called KALA, Kids Against Lupus and Arthritis, our aim is to do exactly that, explain these conditions in a simple not so scary way. I'm sorry to hear life is being so challenging for you and your family at the moment. I do hope our information may be of some help. Find us at kalauk.org.

    Best Wishes

    Eve

  • Lupus Foundation of America has many articles for you to roam through (if you haven't already).

    "Your mum" jokes are unacceptable (but sadly uncontrollable). Perhaps the school can give a talk about Diseases being a part of the human condition?

    Compassion and many hugs. To you to both of your sons.

    I hope this is some help to you.

    Please take care.

    Lupus Foundation of America Helping Children Cope with Illness in the Family

    lupus.org/webmodules/webart...

    Lupus in the Family

    ttp://www.lupus.org/webmodules/webarticlesnet/templates/new_learncoping.aspx?articleid=2260&zoneid=528

    Prognosis and a Hopeful Future

    lupus.org/webmodules/webart...

    Coping with an Autistic Brother

    npr.org/templates/story/sto...

  • hello tidmusshaz

    i too have children and my daughter whos 13yrs at first found it very difficult to understand and cried a lot and also kept asking me if i will die,as some web sites are very scary even for me.

    so i gave her the lupus leaflet to read and told her not to look on the internet but to ask me and i will be honest . The nurse at the hospital gave me the leaflet and this has really helped because we both sat down together and read it all the way through and it was very gentle and even made me feel positive.

    i feel that in some ways you have to be honest, without frightening them and l personally have been quite honest with both my children.

    my daughter has also started wearing the lupus wrist band everyday and for her its made her feel part of something good it instead of feeling like its something to be so afraid off.

    i really believe that your son in time will understand more as he gets older he is so young, bless him school can be so cruel but talking and lots of reassurance really helps.

    good luck

    xx

  • Thank you so much Ive not had chance to talk these through with him today as started back to work after 6 months off sick so been rather akward, going to chat with him tomorow x x

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