Registered Disabled with Sarcoidosis ?

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Ive had Sarcoidosis for 2 years, and been off steroids for nearly 2 months and determined to stay off them. I would say the Saroid is more noticable if thats the correct phrase but my mind is much clearer without them. I also have scarring to my legs from the infections i had at the time which cause me alot of pain and make it harder to walk. It has been suggested to me that i register myself as disabled. Now I have no issue with the 'label'. My Dad has been disabled all my life (Im 42) through a car crash and other friends and family are disabled so its 'normal' to me, if that makes sense.

I was just wondering if anyone else was registered disabled through Sarcoidosis and as its a 'rarer' disease was it a problem. I dont see Sarcioid as a disability its a way of life to me now and although im much better than I was, im still quite ill with it. Yet it may be a positive step where society, workplace maybe able to be more supportive? The jury is out for me on this one

I hope you fellow endurers of Sarcoid are doing ok and a day of sunshine brightens you all up

Best wishes

Nicola

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6 Replies

  • Posted

    Nicola

    No I am not registered as disabled because of Sarcoid.

    However, my daughter who suffers with disabilities is registered (not Sarcoid).

    This has allowed other doors to open to her. These doors would not be available if she was not disabled. So from my limited experience here I would say that if you qualify then you should walk down that path and accept help that might come your way. We live in Australia so things may be different where you live.

    I believe it is worth reasearching for your circumstances.

    Regards

    Tangles

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  • Posted

    Hi Nickademus,

    I don't know about the laws in your country, but in my country we can't register as disabled due to sarcoidosis if the lung capacity doesn't decrease below 70 %, regardless of how sick we are. And even if lung capacity goes below 70%, we need to have 365 days (one year) of uninterrupted hospitalization/sick leave to be able to file for disability pension. Since laws vary a lot from one country to another, I think you should get legal advice relevant to your case, if someone here cannot help you...

    Good luck,

    Magda

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  • Posted

    Hi again Nicola

    Another thought, if you have social workers available to you they might be able to help you with your valid question.

    Regards 

    Tangles

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    • Posted

      Hello Tangles

      Thankyou for your advice. No I dont have access to a social worker, but I can go and talk to my GP. One of them is very supportive and approachable. One one hand im determined for the Sarcoid to be an aspect of my life, and not my life but there are days when it gets the better of me.And on the other hand I acknowledge the limitiations it brings. I think I will appply and see what happens. Worst case scenario is they say no and everything remains as it is

      Happy Easter

      Nicola

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    • Posted

      Hi Nicola

      when talking to your GP I would mention on several occasions "chronic fatigue". I believe this to be the biggest disabling aspect of sarcoid.

      You can start a task well the same as anybody else. But, after a short while you become fatigued and struggle to go on with the assigned task.

      At least that is how I find life with sarcoid.

      Regards

      ‚ÄčTangles

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    • Posted

      Hi Tangles

      You are so right. Start a task with good intention, the mind is willing and then the fatique strikes. And its on just simple normal tasks.And you have to stop there and then. There isnt an energy reserve to rely on. I describe it as someone pulls the plug out. Ive been off work a week for the easter holiday and ive spent everyday asleep so far. As im working, i think the holiday has been recouping and recharging. frustrating as things need doing but I just cant get them done. Sounds lame but Im sure you get what I mean. There is a big difference between cant do it and cant be bothered to do it. we just cant

      Regards

      Nicola

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