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Thread: Getting involved with SLE

  1. #1
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    Default Getting involved with SLE

    Gday folks,

    I was just wondering if any peeps on here happen to be involved with any lupus organizations or groups. Me being a young male who is now stable and doing well, I feel I might be able to offer help, hope and any other possible gigs. Whats triggered my curiosity is memory of feeling alone and hopeless in my bedroom, in my hospital bed, at the docs or anywhere! I was always on the lookout for (at least) half decent lupus stories but could rarely find them to boost my morale. I particularly crave helping younger patients who are still confused about the disease.

    I remember being 18 years old.....parents asleep, 3am in the morning. And I would be up crying so painfully with an unreal feeing of hoplessness, anger/confusion, depression and a constant feeling of "this simply HAS to be a guttering nightmare...it HAS to be"

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    Remember that hospital you were in? They probably need some help with volunteers. I'm sure there are other teenager patients who need encouragement. let your rheumy know that if he /she has other young patients who need to talk you are there for them. Write an article and see if your local paper would be willing to publish it. Write about your feelings in a journal. Maybe your national lupus foundation would be able to help get it published.

    See if your local hospital would be willing to sponsor a teenage support group for seriously ill teenagers: lupus, cancer and other ailments.
    The only way you can find out is to ask

    Good luck

  3. The Following 2 Users Say Thank You to Nonna For This Useful Post:

    magistramarla (11-19-2011), steve.b (11-17-2011)

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    as this is our family,
    all i can say is .......


    listen to nanna

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    Thats pretty much the best advice possible. I really appreciate it. Thanks =D

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    Nonna said everything that I was thinking.
    You are a fine young man to want to help others.
    Bona Fortuna!
    Hugs,
    Marla

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    You could try your local lupus group, not sure whats about in Melb but there is a group in perth. Not that I've had anything to do with the local perth one but im sure people would love to hear from someone who's been thru what they're going through, especially younger people. I found being diagnosed with this illness was hard enough but also being young and having people around me not understanding why i was so ill or what i was going thru was difficult! Good on you for wanting to give something back!
    Diagnosed with SLE and Antiphospholipid Syndrom - June 2010

  8. #7
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by hating_that_pred View Post
    Thats pretty much the best advice possible. I really appreciate it. Thanks =D
    I can't add anything to the good advice you've already received-Nonna said it all.

    But I would like to tip my hat and say thank you for stepping up, and wanting to make a difference. Like you, I remember the long dark nights when I was first diagnosed, and the isolation and fear I felt. That isolation and fear led me to make some very bad decisions. If I had just one person in my life back then who could understand what it's like to have Lupus, just somebody to talk to, I would not have made those bad decisions.

    You are in a unique position, and I salute you for your willingness to help others to have what you and I did not have way back when we were new to all of this. You are capable of helping many, but even if you only help one, and make a difference in just one life, you will have given a gift that is priceless.

    Rob

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    i think what you are doing is wonderful i have lupus and my 24 year old was diagnosed only a few months ago she is younger and she faces different challenges than me i know this frightens her i think we need to get more information to young people we need to establish a group for younger people so they have the forum to discuss there concerns i know my daughter feels alone even though i have it she needs people her own age to communicate her concerns. if we could establish groups in australia and maybe all over the world just young peoples friendship groups so they could deal with there concerns andbe with people who understand what lupus is and how to cope and live there lives and just to talk.

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    There's so much you can do. Nonna is right about the hospital and also just be open to talking about it wherever you go. I find that people with Lupus or that are battling some sort of disease are put in my path a lot if I'm just open about it. You're a sweet person for wanting to help. You will make a difference no matter what you do - big or small! Also, I started a blog about Lupus and was surprised at all the emails I got from people going through the same stuff. From all over the world!!

  11. #10
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    Its hard to respond to all of you because theres so much good advice and people caring. So all I can say is thanks a trill! I didnt quite expect this much support but its much appreciated.

    I found a lupus group in Melbourne, I even gave em a bell, unfortunately its there break for the next couple of months with xmas and new years approaching, but im getting closer.

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