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Thread: Results Showed 7 Out Of 10 Patients Reported That Lupus Affected Their Careers

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    Default Results Showed 7 Out Of 10 Patients Reported That Lupus Affected Their Careers

    LUPUS EUROPE (LE) and UCB today announced results from the pan-European Lupus European Online (LEO) survey, believed to be the first online survey of its kind completed by lupus patients using validated measures assessing the impact of lupus. These patient-reported outcome (PRO) measures included assessments of fatigue, work impairment and health-related quality of life...

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    Gizmo (05-27-2011)

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    Ya think? Brain fog, pain, inability to get out of bed or sit in the florescent lights (not counting all of the more severe symptoms)... yeah, I think it affects careers.
    Mari

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    I NEED to go back to work financially, but I honestly don't know how I'll work even part time without having to nap in the car before driving home. I left my job to take care of my daughter, now I wish I'd tried to go out on disability for myself.

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    Quote Originally Posted by Gizmo View Post
    I NEED to go back to work financially, but I honestly don't know how I'll work even part time without having to nap in the car before driving home. I left my job to take care of my daughter, now I wish I'd tried to go out on disability for myself.
    It tanked mine. I had been getting worse and worse and a seizure in the office was the last straw. Took almost a year to get disability and my brain is so fried I could never do what I did before. It is so sad that so few understand what this disease does to us. I hope you can find a way to get the disability yourself
    Mari

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    Ok, so the survey demonstrates how SLE impairs the ability to work effectively. So what now? I would like to know who is going to listen to this study. I don't know how long it takes in Australia to get disability, but from what I have heard about the American system, someone over there needs to read this survey, or at least, finance a wider spread survey in order to benefit people who have Lupus.
    Diagnosed with Lupus - 22 June, 2010

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    Linda, in Australia disability payments are very different to America. Over here, there are levels of disability and more often than not they expect you to continue looking for work, exactly asthough you were on unemployment benefit. I went through it to try to get access to extra services. I was under the misguided impression that the disability services on offer would give employers incentives to employ those with disabilities. There is no such incentive. There is also no actual real help provided to disabled job seekers... they get a disability services job seeker thing just like the unemployed and all it offers extra, is the name disability in the title. I thought they would at least have a list of employers with available jobs who are willing to hire those with disability. NOPE!! Its exactly like all the other jobsearch services with nasty nazis running them. I was extremely disappointed. I had volunteered to use the service of my own free will and was treated asthough I was one of those horrible fakers who just dont want a job. They would call at all kinds of inappropriate times and EVEN CALLED MY PARENTS HOUSE! when I didnt answer my mobile phone. After that I told them NOT to call ever again and to remove my name from the service.

    There are no disability services for those who could possibly work but need to be matched up to the right employers. Which is enormously disappointing. I love being able to work and bring in money, but I need an employer who is willing to make some compromises, such as allowing me to turn the lights off when I need, or allows me half an hour to an hour late in the morning on bad days. Where I am working now is ok... but it is stressful. And I cant turn off the lights : (

    Sorry for the big rant.. the disability payments here are so tiny as well.

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    Giggle,
    So sorry that your job search is such a difficult one. I don't understand why you are being treated badly by the system when you are still working. I hope things improve and the right employer comes along, soon.

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