Category Archives: Sarcoidosis

I now have an appointment with my MP Kris Hopkins on Fri morning 13th July, we know the law has not been broken so its going to be a huge matter of principle that the ‘system’ seems to not recognise sarcoidosis, I will be writing an in-depth article on my experience of trying to get help from the benefits system while I was at my worse, which we know the system failed me. Thankfully I appear to be improving even quicker – we think? and my search for appropriate employment will deepen.

All I am after is a system which is fairer to those that can be quite seriously ill but with potential to recover, sarcoidosis is not covered like many other mainstream illnesses, if you put cancer, crohn’s disease, diabetes, and numerous other serious conditions into an illness mixture, what then gets poured out is sarcoidosis, the system fails us big time…

Today I got news that my chest is improving, substantially it seems, so, all round it appear’s my fallen apart body its finally pulling together again! I must really say that all the walking I have been doing must have been helping, next is to get on my bike and get some cycling fitness again. Exercise sarcoid, it really can help, feeling quite happy, living with sarcoidosis! Bring on that appropriate employment.

Its almost two years since I first started with seriously bad problems in my eyes, eventually sarcoidosis was diagnosed, it was obvious that sarcoid had helped bring on bilateral uveitis. Some of the scariest times of my life followed, I struggled with simple things like filling out forms and counting out bus fares, crossing the road was another matter, judging the kerb and traffic was a huge challenge.

Thankfully things seem stable, well, my lungs, although one of the nodes is now slightly smaller the others are the same, the breathlessness can be so frustrating, but I feel sure the direction is still good. Onward and upward…

And so the evidence builds, my evidence against the corrupt benefits system. I have to prove that I was unable to work as of June 2011. As can be viewed here I started to be ill in June 2010, in fact it was earlier but this is the time I could no longer work and had to go on the sick. Eventually we found it to be a condition sarcoidosis, at the time I was employed as a healthcare support worker at Airedale Hospital.

As of June 2011 I was not allowed to return to work, jointly because of my medication and the fact I have sarcoidosis, both of these combined and working with ill folks are not good ideas as it could well have seriously put my health in a perilous position, you can view one of the letters from the hospital doctor below.

It should be clear cut in my favour but as so many sarcoidosis sufferers find out the system and its helpers in ATOS seem to struggle to recognise sarcoidosis, what is sarcoid they should ask, well sarcoidosis is/can be a serious medical condition and despite many folks views it can most certainly be fatal.

It were not until the end of 2011 that the consultants decided to reduce my Prednisolone, that resulted in my lungs getting some serious attacks from the sarcoid and therefore to double my original dosage of 20mg/day to 40/day.

Updates will follow.