10 responses to “Sarcoidosis disability employment and support allowance benefit”

1. Adam

   August 4, 2017

   Forgot to add, today I moved Hospitals as I wasn’t happy with my level of care, the Doctor there pretty much said (in a far more politically correct maner) they’re only really bothered/interested if you’re black, because aparently for white people you only get one flare up / incident of it and that’s that.

   And wait for it, most white people don’t even know they had Sarcoidosis until getting a scan (he claims 3 patients this week were in car accidents etc and were found to have a mass in the lungs).

   It’s absolutely disgusting.

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2. Adam

   August 4, 2017

   I only have flare ups which they refuse to treat at all with Pred, infact they wouldn’t even give me a steroid inhaler, I use a blue one on flare ups to help me breath and no one will prescribe me one.

   I do however have that thing that can crop up where you can collapse and you require breathing therapy for it, basically it’s like a stroke/heart attack.

   Can I get a single penny in aid? Nope, I cannot, If you can make a sandwich you’re not disabled according to the Government.

   I have to work for myself, no one in their right mind would recruit me, how are you supposed to live when people won’t recruit you? Unless you totally lie about your illnesses, which never works well in the long run!

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3. rochelle

   August 30, 2015

   I have sarcoidosis and get esa and dla. Both higher rate. It is recognised though I do have antipolosipilid alongside it.

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4. sharon

   March 31, 2015

   I myself have had sarcoid for nine months now im on esa allowance but it wasnt easy for me to get on it lots of questions i also had to tell them all the meds i was on it ridiculous and i feel that gps benefits decisions officers need to be made more aware of our condition and how it can effect us as not enough is known about it

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5. sharon

   February 15, 2015

   I too have had sarcoid for six months now in my lungs and joints my lymp nodes feel like they are affected now as well im also finding it hard to cope i am so badly fatigued all i want to do is sleep i did eventually get on esa but not without alot of trouble from social security the people dealing with sickness benefits and all dont know enough about our condition its awful i feel for anyone with satcoid as it does really affect us even though im on sick i still have to go to work focused meeting which is hard as i have lots of bad days more needs to be learnt bout sarcoid so there is more help for all us sufferers

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6. Ro

   March 4, 2014

   I was diagnosed with sarcodosis 2years ago after a month in hospital. I too think this should be recognised as a disability there is soo mNy people with sarc. Most days I can’t move I’ve recently got a fracture in my foot could be due to sarcodosis. My whole body aches. I still work full time and have two small children I am only 33 years old. My knees are getting worse because go my fracture. I have also been diagnosed with cervical cancer type 2 which got treated after I complained I now also have vulva pre cancer which has become worse in the last 6 months because the nhs are soo slow.

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7. Linda connachan

   June 2, 2013

   I have finally been diagnosed with sarcoidosis after nearlu three years .had ct scans xrays .biopsys so its actually a relief to have a diagnosis .one of my docs actually says to me hows my wee guinea pig ..i assue he meant he was trying to find what was the matter with me .any way they tried me on steriods never hrlped at all so I asked what else can u give me .he said nothing .so im.back to square 1 im so fed up.being in pain all over as its in my lymph modes and im hoarse all time cant speak .im just about managing my job .but for how much longer ive no idea just wanted treatment but there is none only steriods and they didnt work for me .

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8. Mr Rachid Hnida

   January 1, 2013

   Yes good relief to find this Kind of information as I have also been suffering from sarcoidosis fo years .its affecting my nose and it’s chronicly inflammed and eating the inside of me .i have has 6 operations in my nose to reduce the inflammation and after each operation the pain increases and becomes unbarable.my Sarcoidosis has been uncontrollable and had left me with a chronic pain due to damaged nerves in my nose .i would describe the pain as suicidal.Hearing that the ESA does not recognise this painful disease has put me in more pain and depression as iam due for my assessment soon and so scared and have lost faith in this unfair system of this new government.

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   1. Stuart

      January 5, 2013

      This information is mainly through my own experiences and of searches, we are not believed by most, yet most would not know how to believe us? they would also struggle, are they are a shambles to and for us? yet we also expect the truest of friends to believe and understand us – its a living, breathing nightmare, but we push on…

      Reply
      1. Adam

         August 4, 2017

         I know people with MS who can’t even get benefits. It’s a total game, and you just need to know how to play it.